ACW: HIV Testimonies

Africa: Putting Human Faces on HIV/Aids

2008-05-20T09:36:00.000+07:00

By, Cindy Shiner, allAfrica.com, May 19, 2008

The widely acclaimed book, 28: Stories of Aids in Africa, has been highly praised for humanizing the story of HIV and Aids in Africa for readers around the world. The book tells the stories of 28 people affected by the virus – one for every million of those believed to be living with HIV in sub-Saharan Africa. Stephanie Nolen, author of the book and Africa bureau chief for the Toronto Globe and Mail, told AllAfrica's Cindy Shiner that her goal was to help readers get past the statistics and to put a human face on those 28 million people.

What did you hope to achieve by writing 28?

It's easier to care about this issue when you start to see those affected as individual people and to understand that it is every bit as disturbing to hear the news that you have HIV in a little counselor's office in Malawi as it is in New York or London or Toronto or Sydney.

I was writing for a northern, or developed world audience, trying to get them past the lack of engagement with this issue, which I think sometimes comes either from being paralyzed from the statistics or from thinking, "Well, sure Aids in Africa is bad but it's just one more bad thing in a place full of bad things so it's really not any different." [I wanted] to say actually that all of those [living with HIV] are people with families, people who had dreams and ambitions, people who would be as terrified by this news as you would be.

Have you succeeded in doing this? And if so, how do you measure it?

I have no idea, I think because it's almost impossible to measure. The ultimate goal was a broad change in Western public opinion and I don't know how one would assess that.

The response to the book has been quite gratifying. It's been published in 13 or 14 countries in a number of different languages and I've received lots and lots of mail from readers and really good attendance in places where I've spoken about it, either by myself or with people who were featured in it. So that's heartening because your gut feel when you set out to write a book about HIV in Africa is that no one will read it.

When I started writing the book, and certainly when I started reporting on this issue in Africa full time, there was a complete lack of interested engagement in the North. Over the time… I was covering this issue I saw a lot of things change. By the time I was finished, the GAP had a clothing line for the issue (HIV/Aids). So obviously it was on the radar in the West in a way that it just didn't used to be at all.

I don't really know how I would separate out the impact of 28 from things like the involvement of Bono or the efforts of Bill and Melinda Gates. I think a lot of things happened at once and 28 was a part of that.

Once you began reporting on the pandemic in Africa, did you come to realize that you had misperceptions about HIV/Aids and if so how were they turned around?

I wouldn't say that I had misperceptions that changed particularly. I think maybe I [developed] a deeper understanding of how these issues are incredibly complicated.

To give you an example, I was writing about migrant labor and the role that that's played in transmission of the virus. I was talking to some epidemiologists who had been tracking communities of miners who come from either rural South Africa or the surrounding countries to work in the mines around Johannesburg. The miners are here for a couple of years and then they go back home. And I was writing about how that quite often those men will have sexual partners in the cities where they live – which is not difficult to understand if they're away from home for a couple of years – and then they take the virus back home with them and infect their wives. That's the standard route of transmission that's discussed.

But in talking with these epidemiologists, they said, "Well, actually, when we survey miners we find that half of them are in couples where one partner is infected and the other isn't and half the time it was the women who were infected and not the men." What that says, of course, is that when these men went away, their female partners, their wives, were also choosing to have other partners, again perfectly understandable, [for] people looking for companionship, intimacy, sex, possibly financial support, while their partner was gone for years at a time.

The discussion around how the virus is transmitted is always about men and quite often there's a very loaded discussion of African men and their sexuality – which to some degree has its origins in behavior that has been extremely damaging… Nobody was talking about the fact that there were a lot of women choosing to have partners when their husbands were away and what that meant for the transmission of the virus. And, of course, until you're honest about that and really looking at all the ways the virus is moving you're not going to be able to come up with good strategies to respond.

That's a very long way of saying that I learned that there's a standard way that the African pandemic is discussed and below that is a very, very deep layer of nuance that much more often is glossed over.

What did you think was missing in the literature that prompted you to focus on the pandemic?

You never heard the human stories. If you got any news outside Africa about the Aids pandemic, it was this flat, one-dimensional picture of poor suffering Africans. You never heard about the fact that virtually everything that had been done to respond to the pandemic had been done by Africans, usually by Africans living with HIV. And you didn't hear the stories of incredible courage or resilience that I was hearing all the time.

You didn't see these people as people and you certainly didn't hear about all the ways they were taking on governments and pharmaceutical companies and even their own communities, their churches, their families to respond to this.

What was the reaction of your editors when you told them that you wanted to focus on HIV/Aids in Africa?

Initially it was extremely dubious. They were not enthusiastic at all. They couldn't believe that this would be anything but a continuation of that one-dimensional, extremely grim story.

We recently spoke with Stephen Lewis [formerly special envoy for HIV/Aids in Africa for United Nations Secretary-General Kofi Annan] and one thing he feels strongly about is the U.S. administration's Aids plan, Pepfar. He contends that Pepfar does not go nearly far enough to address HIV/Aids and that people should demand more rather than cheering what the administration is currently doing. What is your perception of Pepfar?

Well, I think about Pepfar like any other Western donor government response to the pandemic: I would say they don't do enough. But to my great surprise I have been extremely impressed with Pepfar.

Everywhere I go in Africa it is the most effective, most efficient response to the pandemic that I've seen. They spend money quickly and intelligently and they have a huge impact. If you look at the numbers they have on treatment, the number of mother-to-child transmissions they've prevented, the number of tests they've provided, it's been incredibly successful. Obviously it had some extremely large problems at the beginning that were the result of catering to American political constituencies [rather than] out of any real concern for the people of Africa… But most of those have been dealt with.

Sure, it would obviously be great if Pepfar were bigger and had more money and worked in more places and that's probably Stephen's point. But I think that frankly the Bush administration deserves a lot more credit for this than they've received. I would say that it's their great American foreign policy triumph and virtually nobody in America seems to know about it.

Are you planning a follow-up to 28 and to what extent to you keep in touch with the people profiled in the book?

I'm not planning a follow-up. For every subsequent edition I update the epilogue with the latest news of the people who are in it. I am in pretty close touch with all of them… It's really nice to see the way the book has had a really positive impact on a lot of their lives.

Is there anything else that you would like to say?

I have seen so many individual acts of great courage and heroism in so many different countries. People who are… fighting these fights are working with no resources, often when they are ill in isolated areas, up against huge forces and nobody writes this down.

There's been almost no recorded history of 25 years of response to the pandemic in Africa and almost all of these individual acts of heroism have been lost. There are a couple of people like Zackie Achmat, whose stories are quite well known internationally, and he's a huge inspiration for other Africans.

When the International Aids Conference was held in Toronto in 2006 I was almost finished writing the book and 13 people profiled were at that conference representing their organizations. My publisher hosted a dinner, and sitting listening to them talk to each other, listening to the Nigerian talk to the Zambian about what they were doing about prevention of mother-to-child transmission, and the South African talk to the Ethiopian about what was happening in the armed forces for HIV prevention, was possibly one of the most wonderful moments of the whole process for me.

I thought, this is not an opportunity that these individual Africans get. They don't realize that what they're doing is actually being repeated all over the continent, that other people have exactly the same challenges.

It's important that just a little bit of this get written down because by the very nature of HIV you lose so many of the people who've been important in these struggles... I did not have that as a goal when I started but certainly when I finished I thought that I hope the book does a small, small part of that.

Source: http://allafrica.com/stories/200805190274.html?page=2

Biggest hope: To live longer

2008-01-08T10:20:00.000+07:00

By, Swatee Kher, expressindia.com, January 8, 2008

The new year is bringing new hope for me, of living and being able to raise my seven-year-old daughter. I want to live long enough to see my daughter grow up. I want to live for her. I hope we start getting the new medicines soon.”

For the frail and shriveled Sulabha Naik, an HIV-positive mother, the big new hope comes from the second line of drugs all set to roll out from the Anti Retroviral Therapy (ART) centres. They will help her body contain the deadly virus and perhaps stop her from moving to the AIDS-level. Though this single parent’s CD4 count — used to assess immune status, susceptibility to opportunistic infections, need for ART and for defining AIDS (if CD4 count is less than 200) — is over 600, she has suffered severe weight loss for a year now and she is suffering from side effects caused by two drugs she was consuming.

“I cannot afford to take the medicines from a private setup. I hope the government can provide us with the medicines through the ART centre. Sassoon Hospital had made a list of people who have developed side effects for the drugs and I am on that list,” says Sulabha, who works as a peer educator in Pune. Mumbai’s JJ Hospital will be the first in the region to offer the second line drugs.

A resident of Pune, she became aware of her HIV positive status in 2000 and joined the ART regime in 2004 at Sassoon Hospital. Her husband, also HIV positive, died a couple of years back, while her daughter is negative. During the initial phase of her disease, she even attempted suicide as family and friends suddenly turned them into outcastes.

Now, with the news of the second line of drugs to roll out at JJ Hospital and at Tambaram Hospital in Tamil Nadu, she doesn’t mind making a monthly trip to Mumbai.

Earlier this year, the National AIDS Control Organisation (NACO) announced the commencement of the second line of drugs after patients reported resistance to the first line of drugs being given since 2004 through ART centres across the country. According to NACO guidelines, there will be two sets of beneficiaries, one where first line therapy has failed to work and the other where there is a planned discontinuation due to side effects of one or more drugs from the first line regimen.

Sulabha, like hundreds of others in the country, is waiting for the NACO programme to roll out this month in Mumbai and Tamil Nadu.

In Chennai, S Manjula is waiting for the second line of drugs for her husband.

“You know, all the efforts in providing the first line of drugs for patients like us will be wasted if we do not shift to the second line. Even though I want to, I cannot afford to shift to a private setup for the medicines,” she says.

The criteria to select patients for the second line drugs have also been drawn up. A patient whose CD4 count falls below the base line after a high or persistently remains less than 100 is eligible, as also those who develop opportunistic infections and whose viral load count is 1,000 copies/ml.

“We are to start the second line of drugs in January. The pre-screening of the candidates is going on. We have not made the entire list yet,” said Dr Alaka Deshpande, who heads the ART Centre at JJ Hospital.

“This comes as a blessing. Patients are in need of the second line of drugs. We are waiting to understand how the plan for the second line of drugs will be rolled out in the state,” said an AVERT society official. “If patients get it through the government ART, it makes a difference in terms of finance. If they can save on the expenditure on medicines, they can spend on nutrition.”

“The second line of drugs are now needed as doctors tell us that there are more than ten per cent patients who are resistant to the first line here,” said P Kousalya, president of the Positive Women’s Network from Chennai. She, however, added that some centres started by the Tamil Nadu State AIDS Control Society were already offering the second line of drugs.

“There are perhaps two-three reasons which spell the need for the second line of drugs. One could be adherence problems among the patients for the drugs, which are combination pills. Second is resistance to the regime that is being given. And the third would be toxicity (side effects) of the drug in the patient,” said Dr Dilip Mathai of the Christian Medical College, Chennai, one of the members of the team that recommended the medicines to be included in the second line of drugs.

“I know that I have to change the medicines, but I don’t know what to change. After knowing the resistance test results I will know which class and domain to select from,” says Sulabha.

With the ray of hope on the horizon for her, Sulabha now wants the sun. She wants the medicine to cure HIV, so that “we can also hope to be rid of the disease and not just look forward to living as long as we take medicines.”

Source: http://www.expressindia.com/latest-news/Biggest-hope-To-live-longer/256313/

Neither living nor dying, I’m an HIV AIDS patient

2007-08-31T11:11:00.000+07:00

By, Jamila Achakzai, Daily Times (Pakistan), August 31, 2007

Islamabad: Jamal Khan is one of many who repent their extra marital sexual relations, which have made them to lead life with HIV-AIDS.

Now aged 31 and admitted in the Pakistan Institute of Medical Sciences (PIMS), this father of four says he has lost good health, honour, money, relations, peace of mind, and in a word, everything to the deadly disease and has no charm in life.

Lying on a bed in a general ward, Jamal, whose name was changed on his request, has his sunken eyes and cheeks. Excessive loss of hair has rendered most of his head bald and his skin has turned black. He looks like a skeleton.

Belonging to a poor family of the conservative Malakand agency, Jamal was employed in a private construction firm in Saudi Arabia as a labourer and used to return home on vacations every year. As usual, he came back a few months ago to see his small family. Here, he had high fever for many weeks despite medication. Upset by his condition, he consulted doctors who recommended him for certain medical tests. To his horror and distress, the tests declared Jamal HIV positive two months ago and thus, landed him in a PIMS ward. He has been under treatment there ever since.

Jamal had contracted the deadly virus from a sex worker in Saudi Arabia. He insists he might have committed suicide if he knew he was an HIV-AIDS patient to avoid social stigma attached to a sex-related disease. Except for his brothers, his entire family is oblivious of his medical condition, as he has kept it in dark for the fear of abandonment. He knows he has not a long life ahead of him and wants to share all this with them at the earliest possible. Jamal says he is not a man of bad character and had committed just a mistake. “I wish my family and society forgives me because I regret having sex outside marriage. I feel ashamed to think about the time when my wife and children would learn about my disease and the immoral and un-Islamic act that caused it. They will abandon me which I cannot afford,” he told Daily Times.

With tears rolling down his cheeks, Jamal said he was neither living nor dying and was just like a living dead body. He regretted being looked down upon as an AIDS patient and disliked being avoided as if he was an untouchable.

“My message for people is that they should prevent themselves from establishing extra-martial relations to prevent HIV-AIDS by waging jihad against desire,” he said.

According to figures of National AIDS Control Programme (NACP), Pakistan has so far 3,198 HIV/AIDS registered patients. Independent estimates, however, put the number at 70,000 to 80,000, which means the country’s 0.1 percent population is suffering from the disease.

Source: http://www.dailytimes.com.pk/default.asp?page=2007%5C08%5C31%5Cstory_31-8-2007_pg11_9

Margaret Zania, "Taking care of my HIV+ grandchild has changed my life"

2007-08-02T11:16:00.000+07:00

By, IRIN PlusNews, August 1, 2007

Margaret Zania, 60, a petty trader in Bukavu, capital of South Kivu Province in the eastern Democratic Republic of Congo (DRC), is all that seven-year-old Mwajuma Rajabu has in the world since her parents died of an AIDS-related illness in 2005. Zania's life has been taken over by caring for her grandchild, who is often ill. She told IRIN/PlusNews how her life had changed.

"As a single mother, I was already living with one of my sons when my daughter started getting sick. She and her husband tried to deny the fact that they were suffering from AIDS but it was there for all to see. My daughter was a lay preacher and her husband was a football player. They had two other children before they had this little girl, Mwajuma. I thank God that the other two children do not have the virus.

"My daughter's condition worsened in 2005, and she died in September, with her husband following her soon thereafter.

"Before taking in Mwajuma, I used to sell soap and second-hand clothes at the market, and this could sustain me. But since there was no one else to take care of Mwajuma, I had to stop the small business in order to be there for her. She was always sick: her stomach would swell so much, then she would have diarrhoea and many other ailments that I don't know their names. It was very stressful for me and my son's family.

"I took Mwajuma for testing soon after the deaths of her parents and she tested positive. I was devastated: What do I do now? Will she grow up like other children?

"That is when I sought help from Foundation Femme Plus [a Congolese non-governmental organisation supporting people infected and affected by HIV/AIDS]. Now Mwajuma is on ARVs [antiretrovirals] and her bouts of sickness have decreased. She is now healthy, she plays like other children and I am even looking forward to seeing her go to school.

"Looking back, I know that HIV/AIDS has changed my life: I have learnt to accept the people living with the virus, and I know that with proper care and medication my grandchild will grow up to be healthy and go to school. Who knows, maybe she will be an important person in our community one day.

"Now that Mwajuma is no longer as sickly as she used to be, I wish I could get financial help to enable me resume my petty trade. Look at me - I am 60, and can still try to fend for myself. When she goes to school, I would like to have my life back, the life I had before 2005."

Source:

YEMEN: "It's tough living with HIV"

2007-07-27T13:14:00.000+07:00

By, IRIN PlusNews, July 26, 2007

For Alawi Bahumaid, 41, who recently lost his job with a Norwegian oil company in Yemen, the bitter struggle of rebuilding his life and looking for a new job starts again. "This is the second time I have lost my job because of my HIV status," he said in the capital, Sanaa. "I had such hopes this time around."

Those hopes were dashed, however, when two months after Bahumaid started the job, his previous employer was contacted for a reference, and his current employer discovered that their newest staff member was HIV positive. Fearing a revolt by the other workers if he was returned to the production line, his employer summarily dismissed him.

"It's tough living with HIV," said Bahumaid, who has done so since the 1990s. "People in Yemen don't know what HIV is, and are afraid to shake my hand or even talk to me."

He described discrimination against those living with HIV in Yemen as "rampant", and has become a reluctant advocate of sorts. "This time I'm going to speak out," he said.

But in Yemen, a staunchly conservative tribal society of some 20 million people, where over 40 percent of the population live below the poverty line, it is going to take more than speaking out to change things: it will need action, particularly by the government.

Rampant stigma

The government's National Strategic Framework for the Control and Prevention of HIV/AIDS acknowledges that Yemenis living with HIV are heavily stigmatised: they often flee or are even expelled from hospitals where they have sought treatment, and face harassment by the police.

Like other countries in the region, Yemen requires HIV sero-negative status for foreigners seeking residence or employment. HIV-infected foreigners are deported, with many policymakers considering this a necessary and fully justifiable measure, which reinforces the longstanding denial and stigma regarding HIV and AIDS.

Although the government's commitment to controlling and preventing the pandemic is evident in its adoption of a national framework in 2002, it is clear that much more is needed in terms of treatment and assistance to people like Bahumaid, who have to live with the discrimination.

"People living with HIV suffer a lot," said Fouzia Abdullah Saeed Ghramah, director of the National AIDS Programme (NAP) run by the Ministry of Health. "[They] are denied their rights, particularly in the area of employment, which in turn leads to additional social and economic problems. We're working to address that."

But efforts to combat the prevailing stigma and discrimination are up against the negative perceptions held by even the country's most educated inhabitants.

The results of a survey published in the daily Yemen Observer newspaper on 10 July indicate that shame and fear of judgment are among the greatest obstacles preventing HIV-positive people from obtaining diagnosis and treatment.

The study, conducted by researchers at Sanaa University, compared the attitudes of medical students with non-medical students, and revealed that even educated people harbour a negative bias towards AIDS patients, and often misunderstand the disease.

Low prevalence

According to the NAP, 2,075 cases of HIV have been recorded since the first case was reported in 1987. However, health experts believe the real number to be over 20,000.

"Nobody can prove it; nobody can deny it," said Abdullah Abdulkarim al-Arashi, executive manager of Yemen's AIDS Project Unit, part of the government's National Population Council, which aims to improve awareness levels.

"People prefer to view it as a western problem and are afraid to even talk about it. And without awareness they will never talk about it, nor will people that are infected go to hospitals," he said.

Although life-prolonging antiretroviral drugs are available in Sanaa and the southern port city of Aden, the country's two largest population centres, al-Arashi noted that the lack of openness about HIV prevented many people from seeking treatment.

"Our society here in Yemen is so closed. To talk about HIV is shameful, as people associate it with sex," he said. Most people believe sexual contact is the only mode of transmission.

"People are afraid to disclose their HIV status; they are afraid of the government; they are afraid of the policemen, and even of their families."

One man in Aden was barred from entering his home by his wife and children after disclosing his HIV status. "You are infected with HIV. Get out," his wife reportedly screamed before calling the police.

"Regrettably, this is our mentality toward HIV," al-Arashi said. "This is what we are trying to change now."

Lack of legislation

Although there is no legislation to protect Bahumaid and others from discrimination, the establishment of Yemen's Ministry of Human Rights in 2003 offers some hope.

Referring to the lack of legislation for protecting people living with HIV and other chronic diseases, Nusaibah Ghushaim, the ministry's manager of information, told IRIN/PlusNews, "This is something that needs to change."

She was confident that appropriate laws would eventually be passed, but feared that implementing them in Yemen could take much longer.

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AIDS women fight fear and stigma as well as disease

2007-07-24T11:48:00.000+07:00

By, Jane Lee, Reuters, July 23, 2007

When Papua New Guinea's Maura Elaripe was diagnosed with HIV she thought it was a death sentence, but 10 years later she is still fighting the disease and the fear and stigma associated with it in her homeland.

The 31-year-old former nurse said many afflicted with the disease are left untreated to die in Papua New Guinea, a developing nation where black magic still rules many people's lives.

"I saw people dying in front of me -- deaths which could have been prevented," Elaripe told Reuters at the International AIDS Society conference on Monday.

"I saw a 16-year-old die just next to my bed. They said we don't want to waste our medicine on her. Another woman with HIV died and was put in a black garbage bag and they disposed of the body...that freaked me out. I was so scared," she said.

HIV-AIDS has found fertile ground in Papua New Guinea, a jungle-clad, mountainous nation, where polygamy is common and rape and sexual violence widespread.

Officially there are only about 12,000 people infected, but AIDS workers estimate that under-reporting and reluctance to be tested mean the real number ranges from 80,000 to 120,000.

The island's 5.4 million people, most of whom live a rural subsistence life, presently face an epidemic on a par with Cambodia, Myanmar and Thailand. An estimated 300,000 people are expected to die due to HIV-AIDS by 2025.

Papua New Guinea Health Minister Peter Barter told reporters at the world's largest AIDS conference that polygamy was a major obstacle in the fight against HIV-AIDS in his country.

"In many parts of Papua New Guinea a person can have up to 5 or 6 wives and 20 children. We have to change that behaviour, its a cultural matter and it will take some time to do it," he said.

WOMEN CARRY HEAVY BURDEN

The United Nations says close to 40 million people are infected with the HIV-AIDS virus -- almost half are women.

Women are eight times more likely than men to contract HIV during unprotected sex, with most learning they are infected once they are pregnant. Of more than 600,000 new infections in children each year, 90 percent are mother-to-child transmissions.

"In some developing countries, HIV has significantly increased the burden of care for many women, particularly in the developing world with far-reaching social, health and economic consequences," said Francoise Barre-Sinoussi, from France's Institut Pasteur, told the conference.

When Elaripe was diagnosed while pregnant, there was no counselling available -- she lived with HIV for three years without treatment.

"Nobody took care of my emotional needs or my psychological needs. I went home and I said I'll wait for the day I die," she said. "I was so scared to go out. I lived in fear."

Elaripe said ignorance of the disease saw her sick baby turned away from hospital because her mother had HIV.

"The next day she died without any medical attention because they said that I was HIV positive...and because I was positive the baby was also positive," she said.

Medical authorities also forced Elaripe to be sterilised after her diagnosis. "I felt that my reproductive rights were also abused," she said.

Despite some improvements in treating HIV-AIDS in Papua New Guinea in the past 10 years, Elaripe said the challenge of living with the disease in her homeland does not get easier with time.

"I'm hoping there will be a cure soon. I'm tired of having to get up every day to take pills...it gets scary," she said.

Source: http://www.alertnet.org/thenews/newsdesk/SYD299830.htm

Why Graça took an HIV test

2007-06-05T11:13:00.000+07:00

By, The Times, Claire Keeton, April 15, 2007

Former First Lady sends message to her family and SA: It’s not a death sentence

GRAÇA Machel, the wife of former President Nelson Mandela, is championing the Each One Reach Five campaign.

Machel said she wanted to reach out to her own family as well as the nation through this initiative.

The former First Lady, who did not hesitate to test for HIV or find five others to agree to do so, said: “I also want to send a message to my own kids.

“I want my family to engage on this seriously, both the Mandelas and the Machels. We are a big family and many of the family are young. I don’t want to go out and do social work and not do it at home.”

In addition to her five nominees, Machel invited her daughter Josina, who turns 31 this week, to take the test.

“We have much in common. She is also socially inclined and works on HIV,” said Machel.

She said she had lost loved ones to Aids, including Mandela’s son Makgatho and her brother-in-law Boaventura Moisis Machel. Graça is the widow of former Mozambican President Samora Machel, who died in a mysterious plane crash in 1986.

She said: “Samora’s brother passed away in 1999. He was strong and well-built and enjoyed life. We saw him going slowly as he did not want to know [his status] and he didn’t want to accept it. At the end he decided to go to test but it was too late and we lost him.”

She said that, in contrast, Makgatho Mandela had found out his HIV status quite early and had taken care of himself, until an opportunistic infection claimed his life, at 54, in 2005.

“We know there are millions among us who do not know their status and that is why it is necessary to promote testing. It is not like 10 or 15 years ago when having HIV was a death sentence with no hope. We have very good reasons to know our status. Now it is possible to live a long, healthy and productive life and to live a long time even before [needing] treatment.”

She praised Judge Edwin Cameron and Sowetan columnist Lucky Mazibuko as role models for living positively and long-term with HIV.

Machel said: “If you do not know your status and don’t take a test you can shorten your life. If you don’t take precautions, you can shorten your life.”

As a social activist, Machel said, she had seen how HIV/ Aids had had an impact on people around her, “adults and children, women and men”.

She said: “One of the problems, particularly with young people, is that either they do not have enough information or, if they have the information, there are so many psychological barriers to overcome to test and know their status.

“Then there is the problem of disclosure to family and friends, a boyfriend or girlfriend.”

Machel said she hoped the campaign would erode the stigma around testing and HIV/Aids. She had her test at the Nelson Mandela Foundation offices in Johannesburg.

“It feels as normal as if I were doing a malaria test. I am from a malaria area in Mozambique where now and again you get feverish and then have a test. It is like that.”

She added: “HIV is here to stay for many decades at least and we must accept it as a normal chronic disease.”

Josina Machel, the co-ordinator for capacity building in the HIV unit at the Institute for Democracy in SA, said that having an HIV test always made her reflect on her life.

“I have tested before,” she said as she did the test. “But it always makes me stop and take stock of my life, where I am and where I have been. I tell people A, B, C, D and it makes me think: ‘Am I practising this?’ It makes me question my behaviour, which is good.”

A stands for Abstain, B is Be Faithful, C is Condomise and D is Do a Test.

Source: http://www.suntimes.co.za/News/Article.aspx?id=437682

Staying alive: the women who are immune to Aids

2007-05-29T10:35:00.000+07:00

By, The Observer, May 27, 2007
In the past 30 years Agnes has had unprotected sex with up to 2,000 infected men. Yet she and a small number of her fellow sex workers are still free from Aids. Stephanie Nolen travels to Majengo, a slum in Nairobi, to meet the extraordinary women and researchers who are changing the history of HIV

I lay down to test the mattress: it was lumpy and totally unyielding, not the sort of place one would want to spend much time, which seemed a little odd, given the purpose of this room. Agnes Munyiva saw my wince, laughed and patted the bed. 'You need it to be hard, because otherwise you could get hurt when the men are pushing on you,' she explained.

The mattress, stuffed with lumpy cotton and resting on a plain metal frame, fills most of her room, just one metre by two. The walls are made of mud, the roof of scraps of tin. The air has a tang from the raw sewage and rotting food scraps in the alley outside, and Agnes tries to keep the clouds of flies at bay with a crisp white muslin curtain in the doorway. Remnants of linoleum, pieced together like a quilt, cover most of the dirt floor. She has a kerosene burner for making tea and a gas lantern. Two mouldy calendars, giveaways from insurance companies many years back, are tacked to the walls, the only decoration. A collection of worn facecloths hangs drying on a small clothesline. Beside the bed she keeps a large white box, containing the best part of a gross of condoms.

Agnes rents this room for 900 Kenyan shillings (£6) a month, bed included. She doesn't live here - she also rents another room, a bit bigger than this one, on the other side of Majengo, a slum neighbourhood on the edge of Nairobi. She shares that room with the three youngest of her five children. They have never seen this one. This room is just for work.

Agnes arrives here around six o'clock each morning, when the sun is climbing in the sky, and she makes sure she is on the way home before the sun sinks again 12 hours later - she is a lady of the evening who works only in the daylight hours. There is plenty of rape and theft and murder in Majengo in the daytime, but at night the streets are completely lawless. When Agnes arrives in the morning, she sweeps the patch of floor and the narrow alley outside. She makes a cup of tea, sips it from a battered tin mug, stacks the cloths by the bed. Then she takes a low three-legged wooden stool into the alley, sits down and waits for business. 'Karibu,' she says as men pass - Kiswahili for welcome. She gives them a wink and her slow smile that unfurls like honey off a spoon. 'We all try our luck each time a person passes,' she explained. 'If he stops to look at me maybe he is interested, but if not, maybe he is used to someone else.' In front of every third or fourth shack in the streets a woman sits on a stool, modestly dressed like Agnes, who wore a bright wrap printed with blue and yellow chickens on the day she introduced me to a working woman's life in Majengo.

Most days a man stops before she has been in the alley for half an hour. 'They are people on their way to work. Or men on the road who spent the night away from their wives - they pass here for breakfast.' When a man stops at Agnes's soft 'Karibu', she invites him to step into her room. 'Most men are discreet - the ones with wives want to get in the door very quickly.' Inside, they negotiate. The price is set at between 50 and 100 shillings - 37p to 75p. She slides the door closed, but the scratchy sounds of a neighbour's transistor radio drift through the screened window; her customer knows he must be silent. 'We even tell them not to make a lot of noise,' Agnes said, sounding very prim, 'because there could be a family in the next house.' She removes her wrap, lies back on the bed, her arms above her head. She does not embrace the client, whispers no encouragement. This is a brisk transaction. 'If your five minutes are over and you are still there,' she pointed at her chest, 'you have to pay another 50 shillings,' she said firmly. Business concluded, her client steps over the curious chickens in the doorway and back out into the alley, and Agnes cleans up with the cloths and a pitcher of water from the standpipe at the end of the alley. Then she returns to the stool.

This interaction is repeated a dozen times each day. A fair portion of the men who stop have spent time with Agnes before. 'The service must have been good, so they come back,' she told me with a giggle. At the end of the day, she padlocks the door and takes home perhaps 500 shillings, enough for some food bought at the market stalls on the way, and a bit put aside for the next instalment of the children's school fees, or some kerosene or soap.

Agnes came to Nairobi from Machakos, two hours to the east by bus, in 1971. She was 20 years old. There was only the exhausting work of farming at home, and she hoped to find a job in the city. Before long she was hired as a maid in a middle-class house. That lasted a year, and then she found more work mending clothes, and then casual labour in the industrial area on the edge of the booming city. That led to a job making paper bags in a factory - but she injured a finger in the machinery after a couple of years and was fired. By then she had had three small children, fathered by a couple of boyfriends who hadn't stuck around. Her mother had died back home, her father was unwell, and she felt there was no one in Machakos to whom she could turn.

Agnes had only one room, then, in Majengo, the sort of chaotic community at the edge of the city where so many of Africa's rural poor end up. Majengo is built around a vast market for mitumba - second-hand clothes given by North Americans and Europeans to charity shops that end up shipped to Africa in giant bales. Traders from all over east Africa come to hunt for bargains in First World cast-offs. The market also sells everything from plastic washbasins to jerry-rigged, scrap-metal satellite dishes. There are food stalls and tearooms and hostels for the travellers.

Thousands of people move through here every day, many with a little disposable income suddenly in their pocket: like similar communities the world over, it is a natural centre for sex work. In addition to the travellers from out of town, men from all over Nairobi - police officers, civil servants, welders, street sweepers, teachers and taxi drivers - seek out the anonymity of the vast market for their occasional sexual encounters.

When Agnes was despairing about how to make money, how she would survive in the city, her neighbours suggested she try umalaya, sex for money. 'In the neighbourhood there were other women who were doing it, and they encouraged me to try it. I had children who needed food.' And so, with great reluctance, she began to sit on a wooden stool outside her home and try to catch the eye of men who passed by. She never imagined, in those first few weeks, that she would be earning a living this way 30 years later.

Today, thousands of women work in the alleys of Majengo and the other sprawling slums of Nairobi, but only one or two of Agnes's friends from her first days in the business are still around. 'The ones I started with are no longer here - they have died,' she said simply. 'Most of the people I have worked with have died.' Beginning in the early Eighties, women started to get thin, with sharp coughs and white fur that coated their mouths and throats; back then they called the illness Plastic, Agnes said, because city workers hastily wrapped up the bodies of people who died that way in plastic sheeting. Some of the women died there in Majengo, and others went back to the village when they grew too sick to work. But Agnes remained healthy, year after year.

What happened to her - or, more accurately, what didn't happen to her - would prove to be one of the greatest discoveries in the 25-year battle with Aids. She would acquire, over the next two decades, a certain fame, in the world of virology and infectious disease, as one of those Nairobi prostitutes. But Agnes's body would be slower to give up its secrets than anyone imagined.

This story starts with chancroid, a venereal disease that causes suppurating ulcers on the genitals. On the other side of the world from Nairobi, in the Canadian prairie city of Winnipeg, there was an outbreak of chancroid in the late Seventies, and infectious-disease experts at the University of Manitoba began to investigate. Before long they had figured out how to grow the bacteria in the lab, but the outbreak had quickly been brought under control by public health officials, and the researchers were left without patients. That might have been the end of it, had a Winnipeg microbiologist not got talking to a colleague from the University of Nairobi at a conference a few months later. 'You want chancroid?' the Kenyan asked. 'We've got chancroid.'

And so Allan Ronald flew to Nairobi in 1980. He soon noticed that sexually transmitted infections, or STIs, such as chlamydia and gonorrhoea were rampant. He also noticed that most of the people seeking help at government clinics for these infections had in common the fact that they frequented prostitutes in an industrial slum. He and a couple of colleagues set up a shop-front clinic in Nairobi, offering free treatment to anyone in return for participation in medical research. Before long the operation expanded into slums around the city. They were candy-store settings for young western researchers, with more weird microbes coming through the door in a single morning than they might see in a year back home. And their patients were more than happy to participate, in exchange for the top-notch health care they could never have afforded to purchase in Nairobi. 'Here we got treatment if we were diagnosed - the city clinic never had any drugs,' said Agnes, who first attended a clinic in 1983 and soon became a regular. And, she said, she and the other women felt less judged in the research clinic; no one gossiped about the way they earned their living.

In those first few years, the Manitobans and colleagues from other universities in the west who joined them did some important research on sexually transmitted diseases, and the impact on children whose mothers were infected with gonorrhoea or chlamydia. But the discovery that would rock the scientific world came from the whim of a graduate student. In 1985, Joan Kreiss, a student researcher from the University of Washington, decided to test the sex workers, including Agnes, for HIV. The virus had been identified in New York four years earlier, and Kreiss wanted to use the new test for antibodies to HIV. Her older colleagues were dubious. They suspected, from post-mortems on patients who had symptoms similar to those being reported in New York, that HIV was present in Nairobi - and years later, tests of stored blood from east Africa would show that, in fact, some communities in the region at that point had infection rates as high as 20 per cent. But there was not a single documented case of Aids in Kenya at the time, and many scientists were doubtful that women could even catch the disease through sex. So no one was prepared for what Kreiss found. Two-thirds of the women she tested were HIV-positive.

Her findings - one of the earliest recorded signs of the African epidemic - did not go down well. The government of Kenya threatened to deport the foreign researchers and shut the whole project down. 'The government said, "It's not true what you are saying! You're going to drive the tourists out of Kenya!"' recalled a rueful Elizabeth Ngugi, a community health professor at the University of Nairobi. She was working ('in the mud and in the sun and in the rain and in the dust') to get to know Agnes and the Majengo women, building relationships that would be the core of research through the decades. She soon organised 600 women into support groups, brought them into the clinic for classes on sexually transmitted diseases, gave them condoms and encouraged them to present a united front to clients, insisting on protected sex.

Over the next few years, research involving the women yielded two big discoveries. The first was that mothers passed HIV to their babies in breast milk. Researchers already knew there was some transmission of the virus this way, but a study in the slum showed that the longer a mother breastfed, the higher was the risk of transmission - and that far from being negligible, this was in fact a major source of infection. The second major finding was that a person with a conventional STI, such as gonorrhoea, has a much higher chance of contracting HIV - as much as 70 per cent higher - than a person not infected. All of this, however, paled beside a discovery that emerged in the late Eighties. Frank Plummer, now the director of Canada's Centre for Infectious Disease Prevention and Control, in Ottawa, worked in the Nairobi project from its early days. He was intrigued by these HIV-positive women, who gave the lie to so much of the predominant thinking about Aids at the time - that it didn't exist in Africa, that women couldn't get it, that heterosexual sex was no real risk. By 1988, he had noticed something bizarre: over time, more and more of the women were testing positive for HIV - but not all of them. Some, including Agnes, were still around, three and four and five years later, and in their biannual HIV tests they were still negative. Plummer began to track them closely, and concluded that a small number of the women - perhaps five per cent - were simply not getting infected. 'They're basically immune to HIV,' he told me. 'Their immune systems for whatever reason are able to recognise and kill HIV.' In the study of a particularly impenetrable virus, this was a massive discovery.

Keith Fowke, a professor of medical microbiology at the University of Manitoba, who was then a student working under Frank Plummer in Nairobi, explained it like this. 'We did the models and found that these women were not just really, really, really lucky - it was beyond the statistical chance of luck playing a role. We estimated that many of these women have had 500 to 2,000 sexual exposures to infected men when they weren't using a condom.' Surveys found that a quarter of the men who frequented sex workers in the area were HIV-positive. And while Ngugi's shack-to-shack education efforts had early success getting Agnes and the other women to use condoms with some of their one-off clients, there were still many exceptions: men would pay extra not to use condoms - money that women hard-up for cash were reluctant to forgo - and sex workers didn't use them with their 'regulars', men they saw every week or two. Ngugi's surveys found that the women used condoms, at best, only 75 per cent of the time, so there could be no question that Agnes and a handful of others had been routinely exposed to HIV over a decade or more.

Yet they weren't infected. It wasn't good nutrition - the women did not earn enough to eat well - and it wasn't that they somehow took better care of themselves, because they had had other STIs and ailments. Something else was happening to make these women immune.

Then Plummer and his team noticed something even more peculiar. The women's likelihood of being infected with HIV/Aids was related to the length of time they had been doing sex work: the longer a woman had been selling sex in Majengo, the less likely she was to be infected. If she'd been doing it for five years and was still HIV-negative, the data suggested, then the odds were she was going to stay that way. These findings were so counterintuitive that Plummer and his team struggled to find anyone who would publish them. The phenomenon didn't get major attention until two years later, when he described the resistant women at the International Aids Conference in Amsterdam in 1992.

Once the public really began to understand that there were people who were immune to Aids - and the dark irony that it was the sex workers vilified for spreading the disease - Majengo became a focus of attention. Television news teams poured into the slum, clamouring to meet the women. The attention left Agnes baffled. 'I just thank God,' she said then, as she does now. She couldn't explain why she wasn't sick. She could just give thanks for it at Mass every Sunday morning.

The researchers, however, were frantically trying to decode what was going on in the bodies of Agnes and the other women. 'Either the virus couldn't infect their cells at all or the virus could but their bodies were clearing the infection in some way,' explained Fowke. 'But when we isolated the blood cells of some women in the lab and exposed their cells to HIV, it could get inside their cells and was able to replicate and able to grow just fine. So we started looking at their immune system - HIV was able to establish initial infection and the immune system was able to clear it,' Fowke said. 'We've really found cells that can kill HIV in these women.'

Agnes has, in effect, a callus: the first time she was exposed to the virus, her body produced enough killer T cells to fight it off. This part isn't unique - the body of every person who is exposed to HIV mounts some level of response, and sometimes manages to fight it off; a single exposure does not guarantee infection. But Agnes's body, it seems, not only produced sufficient and strong enough cells to fight the virus off the first time, it then produced a whole raft of those killer Ts, flooding her system with guardians whose sole brief was to keep an eye out for cells infected with HIV. The infected cells have a distinct pattern of little bumps on them, called epitopes, which act like a red rose in the lapel as far as the killer Ts are concerned, letting them know just which cells they want to hunt down. Then every subsequent time - probably thousands of times - that HIV got into Agnes's body, her killer T cells drove it back. A person does not normally maintain a large number of killer T cells for a long period - just long enough to kill something off, then production drops. But in Agnes, fairly constant exposure to HIV kept her killer T cell count high.

This conclusion was reinforced when Plummer and his team noticed that women who take a 'sex break' - who make a trip home to the village for a few weeks, or save up a little money and leave sex work for a while to try selling shoes instead, or hook up with a regular who keeps them in cash for a year or two - were far more likely to get infected, almost immediately, if they returned to sex work, even though previously they had had years of apparent immunity. On the break, their bodies stopped making the killer T cells, leaving them vulnerable again.

The Nairobi women aren't the only people in the world immune to HIV. Some Caucasian men have been found to have a genetic mutation that means their cells lack one of the molecular 'hooks' that HIV latches on to, and so they cannot be infected. And no doubt there are other groups of people who, like these women, are able to kill off the virus - but it is much easier to see, and monitor, in this community of women who are repeatedly exposed to the virus than it would be in, say, a group of nuns in a convent in Europe. They might be immune to HIV, too, but how would anyone ever tell?

From the moment it became clear that Agnes and a handful of other women in Majengo - about 100 to date - really could fight off the virus, the researchers in Nairobi hoped that their biology would hold the secret of an HIV vaccine. Soon a team from Oxford University was at work on a vaccine that used the epitopes (the tell-tale bumps on infected cells) that triggered Agnes's killer Ts. They hoped it would provoke other people's bodies to produce killer T cells in the same way that the real virus appeared to trigger production in the sex workers. Trials began in Nairobi in 2001, and a second trial was mounted by Pontiano Kaleebu and his colleagues in Entebbe a couple of years later. But despite high hopes, the Oxford vaccine didn't cause that explosion of killer T cells. And so it was back to the painstaking work of trying to figure out the secret of Agnes's immunity. 'Sometimes a vaccine feels impossibly far away,' sighed Keith Fowke. 'All our knowledge about these HIV-resistant people is interesting and I feel it's important... but it is frustrating.'

For Ngugi, watching as Aids decimates ever more of this community where she has built such strong ties, the gains are hollow. 'Yes, it's fascinating,' she told me. 'But sometimes I feel very sad. Sometimes you are not a scientist but a friend, and you feel the emptiness inside.'

There was a certain sense of breath-holding among the Nairobi researchers when Plummer and his team first proved the women's bodies were able to kill off HIV, but that breath has long since been let out. Today, the research strategy in Majengo revolves around intense study of Agnes and the other resistant women (who make up about five per cent of the cohort at any one time), from analysing their genome to breaking down the chemical components of the mucosal membranes in their vaginas, in an effort to figure out what may be protecting them. So far researchers have not found anything present in 100 per cent of the women, so it may be that the protection comes from multiple overlapping factors, including some that are genetic. There is a strong family correlation - people related to an HIV-resistant woman seem to be half as likely to get infected as people who are not related.

Agnes is aware that she is a fascinating specimen. 'Most of the people have been very interested in me,' she said matter-of-factly. But she has no understanding of the biological basis for her HIV resistance. 'No one has told me,' she said with a shrug. She gets good, free health care at the clinic for the occasional sexually transmitted infection and also for respiratory infections which plague residents of the polluted slum. So she is happy to give them her blood a couple of times a year, and to enjoy a sense of contributing something to her community.

But Agnes's survival has served to highlight a disquieting aspect of this research. She has come to the clinic for more than 20 years. In that time, more than $22m in scientific grant money has flowed through the project, and many of the researchers have earned reputations as the top experts in their fields. Yet Agnes and a handful of other women are still selling sex, to an average of eight clients a day, still for a dollar or two each time - although they say they would like nothing more than to get out of sex work. When I asked her what she would like to do instead, Agnes's broad face lit up. 'Any kind of job I could do. I could be a cleaner or anything. But it's very difficult to get a job - you have to know somebody to get a job.' And Agnes said she doesn't know anybody who could help. With only limited literacy after three years of primary school, and no other skills, Agnes said she sees no other options. 'It's embarrassing, this profession,' she said. She refuses to discuss what she does for a living with her children, although she is sure they know. 'I've never told them what I do, but I think they can see it. I think they know what I'm doing is not good but they know I do it to provide for them.'

Agnes's frustration with her life in sex work raises troubling ethical questions about research, the kind that bedevil investigations into Aids vaccines, prevention technologies and treatment, all of which, by definition, involve large groups of poor Africans, the people most at risk. What obligation does a researcher such as Plummer have to the women who have given him their blood for 20 years? What does this project owe Agnes?

'Those are difficult questions,' Plummer told me. 'My philosophy has been: try to help as many people as we can with what resources we have so we can ultimately solve it. We provide treatment for a lot of medical conditions and counselling for safer sexual behaviour and free condoms and referral to other medical services - which prevents about 10,000 infections each year. We do have an obligation to provide some basic level of care, and since 2004 we have provided anti-retroviral treatment [ARV], which is an important step. But ARV drugs are not going to solve this problem.' Plummer doesn't disagree that women like Agnes need a route out of prostitution. 'I don't know what those ways out are, though, and anything we could do is just working on the margins - it's unlikely we'll be able to do anything to get them to the point that they're not partially dependent on sex work: you can only make so much money selling tomatoes or weaving baskets.'

His Kenyan colleague Elizabeth Ngugi is unconvinced by this line of argument. 'These women have given the world such a huge body of knowledge, but what has the world done to help them change? The research findings have given us so much, but what have we given back? There is more research money coming all the time - quite clearly there is an imbalance.' In 2002, she received funds from a donor agency to train 120 of the women in new skills such as dressmaking and hairdressing, and she said 80 of them successfully made the transition out of sex work. She has helped a few others make their way to local benevolent agencies and out of the business, but most are stuck, and the research budget includes no funds to give them other options - a grim irony when, as she pointed out, they've educated all the women about what a huge risk sex work is to their lives.

Plummer agreed that the women need basic education in numeracy and savings and small-business skills. 'But you can't get a research grant for that,' he said. The ethics of science today require that the women get counselling and condoms, but ethics approval boards make no demands about maths classes or instruction in how to set up an alleyway beauty salon.

There is a small patch of grey at Agnes's hairline these days, and her body has thickened to that of a woman of a certain age. 'I'm getting old,' she said. 'There will be a time that I'm too old - at around 60. Maybe 10 years from now clients will not even look for me. It will be difficult.' Now she feels lucky to get 100 shillings from a client, when a young woman newly arrived in Majengo might get as much as 300 - although in any case, trade is not what it once was. 'Ever since we got this disease, business has dropped. Most men go home to their wives on the weekend.'

Of the men who still buy sex (and she manages to find nine or 10 each day), most now agree to use condoms - but not all, and Agnes worries. She would like to start a small business that would keep her family when men no longer stop outside her room, but she used all the few thousand shillings she had saved to put up a single-room house on the land her father left her back in the village: insurance in case her luck runs out and she needs to go home.

Agnes's mysterious immune system has garnered her considerable fame in the world of Aids, but little else. She lives a life almost totally unchanged from her first days in umalaya 30 years ago. 'I can buy our daily food out of what I earn, and that's all,' she told me as we sat in the shade of her bustling alley. 'I don't feel famous. It's only that my problems push me to do sex work. If I could find something else, I would.'

Source: http://observer.guardian.co.uk/magazine/story/0,,2087394,00.html

An open letter to President of India Ensure Universal Treatment Accessibility

2007-05-22T14:40:00.000+07:00

To,
Dr. A.P.J. Abdul Kalam,
President of India,
Rastrapati Bhavan,
New Delhi, India.

Sub: An open letter to Ensure Universal Treatment Accessibility of
the Citizens Living with HIV in India.

Hon'ble Sir,

On the eve of "INTERNATIONAL CANDLE LIGHT MEMORIAL DAY" as well
as "GLOBAL AIDS WEEK OF ACTION", I would like to take the privilege
to draw your kind attention by remembering our "Citizens Died of
AIDS" to protect the "Rights of Universal Accessibility To
Treatment" of the "Citizens Living with HIV in India" today.

As an ordinary citizen living with HIV for more than 7 years in
India and currently in 2nd line Anti Retroviral Therapy, under the
treatment of School of Tropical Medicines, Kolkata, without the
support of 2nd line Anti Retroviral Drugs as per National Aids
Control Policy.

We the citizens of India needs 2nd line ARD towards our productive
healthy life are living with the support of the foreign donors, with
an unknown support future. Some of them already withdraw support all
on a certain to some people like me, just avoiding Humanitarian
aspect of the stakeholders towards livelihood.

The National Aids Control Policy itself violating the Right to
Survive of the Indian Citizens like me by allowing us to die without
Treatment, although it is called as a Right Based Policy. The Policy
is just ignoring Citizens Lives as well as loosing National Human
Resource or National Productivity, causing "shortage in fund" or
mentioning the lives, "Small in Numbers". Practically, which means
our Government do not give any value to the lives, if they are small
in number! Hopefully, Constitution of India do not support above
mentioned logic of National Aids Control Policy ideally. Indian
Constitution indicates equal opportunity for every citizen.

Under these circumstances, I would like to forward my humble request
to you as President of India to take urgent necessary action to save
the lives of Indian citizens living with HIV needs 2nd line ARD with
an unknown future or to save us not to die without Universal
Accessibility of Treatment.

Thanking you,
Yours faithfully,

Snehansu Bhaduri.
49/A/1, B.P.Dey Street,
Serampore, Hooghly,
West Bengal, India.
Pin- 712201
Ph: +91-33-26521519
E-mail: snehansu_bhaduri@email.com

Accentuate the positive

2007-05-17T14:12:00.000+07:00

By, Society Guardian, May 15, 2007

After Kate was diagnosed with HIV twenty years ago, she writes on how she avoided despair to become an activist for the rights of women with the virus across the world

Twenty years ago I experienced what was probably the most significant event to shape my adult life: at around 11am one Tuesday morning in a clinic in north London I was told I'd tested positive for HIV.

What followed that moment was a time of fear and uncertainty about the future. The only certainty I'd been given by my doctor was that I would die, quite unpleasantly and quite soon. In the spring of 1987 I stopped imagining future relationships, long-term plans or career opportunities. Initially it was hard to think past the next few hours. Slowly hours became days, then days became months and, by the time 1987 drew to a close, I could imagine maybe the next year or two of my life at most. I was living in an unheated bedsit, sharing a bathroom with three alcoholic old men and I was scared of dying. But the council told me it would be several years till I could be re-housed, so that bedsit was where I imagined I would die.

It's 2007 and here I am in Geneva working in an interesting and rewarding job as senior adviser to the United Nations Joint Programme on HIV/Aids (UNAIDS). As of last month, I have a mortgage on a flat in London that would have probably cost me one tenth of the price if I'd bought it back when I was diagnosed. And last September I married my partner of 14 years, in the company of family and friends, many of who have also survived 20 or so years of their own diagnosis and been a source of support, entertainment and gossip throughout. Along the way I have picked up various educational qualifications, including a masters degree and a diploma in jewellery making and silversmithing, and more lines on my face than I'd like to see when I look in the mirror.

So what happened? I think the fact that I survived when most of my HIV-positive friends and colleagues from 20 years back did not make it is mainly down to chance and good luck. Chance and good luck to have become the third member of Positively Women shortly after my diagnosis. My involvement and activism helped me channel my energies in a way that enabled me to wrestle back some control over the virus, and we were able to obtain funding for the group and see it grow rapidly into the large and effective peer-led organisation that it is today.

When we formed the International Community of Women living with HIV, a network of women living with the virus across the world, people believed in our vision and agreed to fund us and listen to us. Again, it was chance and good luck that I didn't die during the time when I first stubbornly refused to embark on anti-retroviral therapy (ART). And it was good luck that the scientific evidence to support highly active anti-retroviral therapy (HAART) emerged when it did, persuading me to finally start taking the medication that has kept me alive.

There are only a few of the old HIV-positive crowd I knew from 20 years ago around now. Some are working in UN agencies and Aids-related NGOs. Others have gone back to the professions they were in before they were diagnosed. Some have retired or are still on benefits. Most are dead.

Some of us who have survived are succumbing to age-related diseases, such as cancer and heart problems. And some are still dying of Aids-related complications, such as my old friend Arnaud Marty-Lavauzelle, one of the first HIV-positive activists in France in the early days of the epidemic, who died in February in spite of being on ART.

A couple of months ago, I was in Iran, where I attended a meeting with colleagues from across the Middle East and north Africa. I was struck by the similarities between the experience of HIV-positive people in the region today and the circumstances we were facing twenty years ago in the UK. There is a dismal lack of services, information and support and in most countries in the region HIV-positive people are not organised into groups or networks and have very little involvement, if any, in Aids policy.

But there are some massive differences too - most importantly, ART is mainly available to the positive people I met, though treatment information and literacy are minimal. People living with HIV in the Middle East and north Africa also face massively different and more challenging cultural and religious constraints and environments than we ever did and encounter huge barriers over gender and human rights issues. Yet, there are brave people coming out and challenging the status quo across the region because they feel, like we once felt, that they have no choice.

Many of us in those early days were driven by the need to make things different and to fight for what we believed people living with HIV needed and deserved. Twenty years on, in the UK and where ART is widely available, fewer HIV-positive people seem to feel the need to become involved in the response. Yet we continue to see the same combination of fury, need, outrage and determination driving people living with HIV from other parts of the world to advocate for change. I believe we need to work alongside them and not be complacent - we may have our health today but who knows what awaits us around the corner?

I think, globally, these are dangerous times for people living with HIV. We need to claw back control of the agenda, especially with the increasing trend towards criminalisation of transmission and other conservative forces at play that seek to contain us and curtail the rights of marginalised groups.

Even though in many ways I've become a bureaucrat, I believe it's my responsibility to serve the HIV-positive community from within the system. The community is where my loyalty is and a large part of what I do is in collaboration with HIV-positive networks. I am also trying to bring Aids activism into the UN in a small way. Along with other colleagues we have created UN+, which is a UN system-wide HIV-positive staff group advocating for improved conditions for people living with HIV both inside the UN and beyond. We met regularly with the former UN secretary-general, Kofi Annan, during his term, and will meet for the first time with the newly appointed Ban Ki Moon early next week.

In some ways, looking back to early 1987, I wish I'd known then what I know now - that I would somehow survive the devastation and the loss of so many friends and, along with other survivors, be contemplating pension plans and mortgages and other daily things that most people take for granted. But I guess if I'd known it all then I might not have fought the battles I fought, taken the risks I took, done the things I did and ended up in the life I have now. I love that life and there's not a day that goes by when I don't reflect on how privileged I am to have it and on the good luck that's allowed me to hold onto it. So maybe it's a good thing after all that I couldn't see what the future held...

· Positively Women works to improve the quality of life of women and families affected by HIV. The organisation was formed in 1987 by two HIV-positive women, who identified the need for services specifically for women. A 20th anniversary edition of its magazine features the stories of 24 women diagnosed over the last 20 years. The different stories show the changing attitudes and treatment of women living with HIV over the last two decades. For details of further events to commemorate PW's anniversary or for more information visit positivelywomen.org.uk.

'I am a survivor'

2007-05-16T11:27:00.000+07:00

By, Jamie Baker, The Telegram, May 15, 2007

The word “survival” means a lot of things to Jennifer Murphy.

When she was 21, she found out she was HIV-positive. She said her doctor gave her three years to live. Her lone goal at the time was to live to see her child go to kindergarten.

Now, at 33, Murphy’s health is stable, but that doesn’t mean things have gotten a whole lot easier.

She has had to deal with being through the public wringer twice over allegations she failed to tell men with whom she had sex that she carries the HIV virus.

“I’ve been scandalized. There’s no other word for it,” Murphy says in a one-on-one interview with The Telegram, referring to how she has been treated in the public eye.

“I’ve been slandered, degraded, and discriminated against.”

On Monday, however, a ray of light shone into what has been an often grey existence for the St. John’s woman, when a charge of aggravated sexual assault against her was withdrawn.

She had been accused by a local man of having sex without telling him about her illness.

Murphy, who had previously been sentenced to a year of house arrest on a similar charge in Ontario in 2005, has maintained the man was fully aware of her health status, and that a condom was used.

In provincial court, Crown prosecutor Frances Knickle said a review of the evidence suggested it would not be appropriate for the case to proceed, effectively clearing Murphy of the charge.

“It’s vindication. This is the best day of my life, I just can’t explain it,” Murphy said shortly after appearing in court — even though it wasn’t required that she be there in person.

“People look at me and say ‘you’re such a strong person,’ but I’m shattered like glass inside. I’m just trying to put my life back together.”

Looking at Murphy, you would never say she’s faced such incredible adversity.

An attractive, petite woman with a 1,000-watt smile and boundless energy, she never breaks eye contact when she makes a point she feels is important.

She said she refuses to let her illness define who she is, even if others have attempted to do just that.

“I am a survivor, not a victim,” she says defiantly.

She acknowledges, however, that there are times when she feels alone and depressed.

But she also contends she has a lot to offer, and insists that, despite her illness, she should be able to lead the relatively normal life of any 30-something-year-old woman.

Murphy said her first goal, though, is to continue educating people about sexual health and HIV awareness. She said her public battles have made her “the ultimate counsellor.”

In fact, she plans to write a book about her experiences and says she is looking for someone to help with writing it.

She also wants to attend the next international AIDS conference in Mexico, to talk about the criminalization of the disease.

“I’m a liberated woman and there isn’t anything that’s going to shut me up. I’m going to be known as a loving mother, a caring friend and an activist,” she says. “I want to share my experience, my struggle, my strength and my hopes.”

Although HIV/AIDS has been around for more than a generation, she said it bothers her that people aren’t taking more care to protect themselves.

It may not be much of an ice-breaker to ask a person in a bar if they have been tested for HIV, for example, but she said the current situation dictates that it might be sensible for more people to do so.

“People are still under the illusion that it can’t happen to them. It happens every day,” she says. “I go to George Street and I see men and girls going off drunk, everybody just wants to have sex and nobody is thinking about HIV or condoms.

“I understand why people don’t talk about it, but you have to start caring about your health.”

Murphy calls Monday’s outcome a victory for both her and the HIV/AIDS community, and credits her family for helping her get through the many ordeals she has faced.

She singles out her mother, brother, sister and friends for “being by my side,” but she pays particular praise to her now-16-year-old son, whom she simply calls “my strength,”

“He is my inspiration and my ultimate reason for living and fighting,” she says. “I’ve been strong for him for so many years and now I’m tapping into his strength.

“He is my angel, my gift. He’s a fine young gentleman.”

Murphy hopes she will be able to have some semblance of normalcy in her life, and says she remains unfettered by how anyone might treat her because of her illness or legal matters.

“This is my conclusion — people who judge me or are afraid to be around me, those are the people spreading HIV because they don’t have a clue,” she says.

Source: http://www.thetelegram.com/index.cfm?sid=29681&sc=79

HIV test was positive, but life goes on

2007-05-08T16:29:00.000+07:00

By, Rhoda Fukushima, Pioneer Press, May 4, 2007

In 1990, Annie Elmer was 32, worked full time as an administrative assistant, served in the Naval Air Reserve, kept physically fit and partied on the weekends. She called it "living in the moment." That year, she met a man with whom she had an intimate relationship. Not long after, she developed symptoms that made her doctors think she had Lyme disease. But Elmer of Cottage Grove put two-and-two together and got an HIV test.

"I was infected. I felt shocked. I was numb. I was so naive. I was confused. Do I have AIDS? What does this mean?

"I had my parents' support from the beginning. But people were still afraid. This was right before Magic Johnson went public.

"In December, I connected with other HIV-positive women and women with AIDS in a support group. All the women said things like 'I'm living for my children.' I didn't have children. I realized I had to live for myself because I probably wasn't going to have that.

"I learned I could be positive about my health. I needed to control the stress. I got what I needed (from the group) and had to leave. It could be perceived as selfish, but it was a survival mechanism. I wasn't in a situation where I could support them emotionally.

"I went on with life. I got the approvals to stay in the Reserve. It was around the time of Operation Desert Storm. It was so much stress, in addition to working full time, I got out.

"I hadn't missed a day of work. But I was an emotional basket case. I talked to my boss and wanted him to know. He was very respectful. I shared the information with only him and people closest to me.

"In 1995, I heard of different drug trials. I wasn't on any drugs. I thought maybe I could do something positive by participating. I was on the drug for a month. The side effects were terrible.

"Because I felt crappy all the time, I wanted to go public at work. My boss was supportive, but we wanted to get our occupational health department involved. There were 200 people in his department. Everyone was invited to the cafeteria.

"I got nothing but positive feedback. Here I had been going the whole time without support, and all these people had all this love. It was a huge weight lifted. I didn't have to keep it a secret anymore at work.

"The disease was becoming known for affecting heterosexuals because of Magic Johnson. That gave me more hope. Also, Pedro Zamora, a cast member with AIDS on MTV's 'Real World,' was a big inspiration for me to go public.

"The AIDS cocktails came out in late 1996. I went on them. I hated them, but in three months, (the virus) was undetectable. I was elated. I was on them until October 2000, when the side effects got to be intolerable. It also had emotional side effects - depression.

"I got so depressed I quit my job. I got offered a different job, and I stayed with the company until March 2004. I could sense it was the time in my life to do something else.

"I went to Dakota County Technical College for two years in exercise and sport science. I shared (my status) with students in my anatomy class. They were open and encouraging. I graduated in May 2006.

"Now, I'm working at a fitness club in Rosemount. I'm also training out of my home. I love what I do, but I'm an independent contractor. It takes a couple of years to become profitable. There's the struggle with finances, but I love being my own boss.

"My health is really good. I just found a combination of medications that doesn't have side effects.

"I could live as long as my parents or longer. I want to live life to its fullest. I want to live as healthy as possible."

Source: http://www.twincities.com/ci_5819396?source=rss

ETHIOPIA: I knew the risk I was taking, but my family had to eat

2007-04-17T09:44:00.000+07:00

By, IRIN PlusNews, April 16, 2007

ADDIS ABABA, 16 April (PLUSNEWS) - By day, Aster Beyene [not her real name], 21, is a saleslady at a boutique in the Ethiopian capital, Addis Ababa; by night she attends computer school. After losing her mother and older brother to AIDS-related illnesses, Beyene has been left with the responsibility of feeding and clothing her remaining siblings.

"Even though I am the last born, I have experienced the struggle for survival first hand, and I vowed to rescue my family from the pit of poverty that seemed to get worse as the days went by.

A middle-aged guy who lived next door had always had his eye on me, but I never considered going out with him before the problems at home. I pushed all the frightening thoughts aside and opted to have a relationship with him; in return, he offered to give me money, including my tuition for night school.

Despite repeated warnings from people in my community that he was infected with the HI virus, I continued having sexual relations with him without protection. I was aware of what was at stake, but my family relied on me to provide for them and I felt I had no other option.

I recently found out that I am HIV positive, but what still worries me most is what I will put on the table for my family. My mother passed away last month and there are still five mouths to feed; two of my brothers are also living with HIV. There is no time to lament my lost childhood or the future I might never be able to witness.

To this day I have a sexual relationship with the man who infected me with the virus. I am also aware that he has another woman in his life.

rm/kr/he[ENDS]

Relaxed about her status

2007-04-11T10:04:00.000+07:00

By, Gontse Gareebine, The Voice (Francistown), April 10, 2007

Botswana: Martha Tsebentlha Baloi is a 49 year-old resident of Sekobowane ward in Rasesa village. She is a single mother of three. Nothing odd about that. But then Baloi is a brave woman, ready and willing to speak openly about her HIV status in a country still faced with issues of stigmatisation.

"I learnt of my positive status last year November when I was admitted at Princess Marina Hospital with heart problems. The doctors attending to me must have seen something was out of place when they suggested I have an HIV test," said Baloi, speaking in a relaxed manner.

She explained how she lost a daughter to what was an AIDS-related illness five years ago.

"I didn't know much about HIV/AIDS then as I do now. I did not use gloves or any other protection whilst caring for my daughter. I suspect that is how I got the virus because I haven't been sexually active for a long time now," she said.

Then, Baloi thought AIDS was a disease caused either by high blood pressure, tuberculosis or pneumonia. Baloi who has fully accepted her HIV positive status has emphasised that HIV/AIDS is no different from any other disease. She understands that she does not have AIDS but the HI virus that can eventually cause AIDS. Having started Antiretroviral (ARV) treatment in December last year with a CD count below 200, Baloi says she cannot complain, as she feels more energetic than ever before. Her three children, she says, have been very supportive.

She has concerns though. The monthly trips that she takes to Gaborone for collection or refills of her medication worry her.

"I have asked to be transferred to the Mochudi clinic since last year as it is the nearest village to Rasesa that distributes ARV treatment. This has not happened due to reasons unknown to me. The transfer will be more sensible as it will definitely cut down transport costs that I struggle to meet. I am not a rich woman and worry about my nutrition too. I am still to register with the government to at least supply me with a food ration. It's been difficult," she said.

Baloi informed the Voice that gossipmongers are the least of her worries concerning the disclosure of her status in public.

"You never know who will be next so my advice is for people to stop wasting time talking about other people's HIV when they don't know where they stand. Go out there, get tested and know your status. The sooner the better," she quipped.

I am free to live after revealing my HIV status

2007-04-03T09:56:00.000+07:00

By, IRIN PlusNews, April 2, 2007

Burundi - Eighteen-year-old Adeline Nzambimana is a secondary school student living in the Burundian capital, Bujumbura. She has had the HI virus since birth, and lost both her parents through AIDS in 1993.

Growing up in her aunt's home, Adeline was only told she was infected with HIV five years ago.

"Since I was little I was always ill; coughing, infections, malaria. I don't remember a time when I was not ill. As I grew up, I started hearing about HIV, seeing people living with HIV.

My aunt from time to time took me to ANSS (an association to support to people living with HIV/AIDS). I started asking myself questions, why was I there? When she told me, I was still in primary school. I was shocked, no, not shocked - it was like a thunder bolt.

I cried and cried, asking myself how I could stand other people's looks; I imagined that everyone knew about my status. At that time, it was very hard to accept - being HIV-positive meant death since so few could afford the price of drugs.

I continued to attend school but it was as if I was not there. Nothing was of interest. At the end of primary school, I spent a whole year without attending school; I was too ill to study. My friends came to see me but I could not tell them, I feared their reaction.

When I started secondary school, things got worse. For the first time, I faced stigmatisation. Pupils were whispering behind my back: "Adeline is positive." I felt hurt deep inside and I stayed alone, afraid of talking to others. I even considered abandoning school. I could not figure out staying there and continuing when the whole school knew. As I was regularly absent, some teachers did not stand it either.

Then one day, I saw other HIV-positive children in a television programme. They were giving their testimonies, about how they are living with the virus. Like me, they had problems. Some were even stigmatised in their own families - which is not the case for me - but they chose to live positively.

From that time, I saw I was not alone and could live like them. I decided to join their association, le R้seau des Jeunes Vivant avec le VIH (the network of youths living with HIV). I first started publicly declaring my status during testimonies at school or at the local youth centre. No more reason to whisper it as a secret, everybody knew. I felt relieved of a heavy burden. Some people believed I was foolish, but little by little, they approved of my choice.

Coming out in the open with my status completely changed my life. I no longer live in fear and my friend's attitudes towards me have also changed; they even come to ask me for advice.

Since I started taking ARVs [life-prolonging antiretroviral therapy] in 2002, my health has improved - I spend months without falling sick.

jb/kr/kn

Pacific pandemic: Combating the spread of HIV and AIDS in the Pacific

2007-02-08T14:02:00.000+07:00

By, Sujata Gupta, Honolulu Weekly, January 31, 2007

Prevailing attitudes, lack of funding speeds the spread of HIV and AIDS across the Pacific

There are two things Angel Cruz can’t live without: tobacco and caffeine. “If you take away my cigarette and my iced coffee, I’m a goner,” she says. But, according to the doctors, there’s something else Cruz needs to survive: immunosuppressant drugs. Twenty-two pills a day to be exact. That’s because Cruz has HIV.

Not that she is complaining. “You know those drugs I’m on, those must be good drugs,” Cruz quips. “If you were to see my picture, you wouldn’t even think I have AIDS because I’m pleasantly plump.”

Cruz’s good cheer is striking considering that at age 33 she has lived with HIV for more than 10 years, has suffered four bouts of meningitis, lost a husband five years ago and can no longer work due to complications from her various illnesses. But Cruz is on a mission. “I just want people to know if you know somebody who has AIDS…don’t shun them away because they’re human beings, too.” And if sending that message means shedding her anonymity, so be it, says Cruz, who told her friends and family about her status within months of her diagnosis.

Now, she’s appeared in media outlets throughout her hometown—an openness that makes her own mother squirm. Family, says Cruz, can be the least understanding when it comes to dealing with HIV. “Before when we were younger, I always kissed my aunties and uncles, but when I got [HIV], there were aunties and uncles who wouldn’t allow me to kiss them anymore,” she adds. “It really hurt me.”

But, Cruz has seen too many of her friends die alone. “I know people who have passed on with HIV and AIDS which is really sad because their family and their friends had abandoned them.”

But if Cruz’s struggles sound similar to HIV-positive individuals in the United States, there is one marked difference: She lives in Guam. “It’s not like on Hawai‘i and everybody’s scattered,” she says. “We’re a small community here on Guam and everybody knows everybody’s business.”

When Cruz was diagnosed with HIV about a decade ago, the disease was relatively unheard of in the Pacific Islands, including Guam. Even though considerable medical advancements had already been made on drugs that could stall the disease’s progress, Cruz viewed her diagnosis as a death sentence. She thought that “once a person gets HIV or AIDS, that’s it. That’s how it was when it first came out—start writing your living will now.”

Cruz’s lack of knowledge about HIV reflects how low the disease has registered on the Pacific Islands’ radar. While the first documented case of HIV in the region occurred in the early 1980s—soon after the disease was first discovered in the United States—the number of actual cases has remained relatively small, especially when compared to other areas of the world, according to the Pacific Island AIDS Foundation website. Now, however, this modern-day disease is slowly working its way into this 22-nation island conglomerate, an area of about 8 million people loosely bordered by Hawai‘i to the east, New Zealand to the southand Australia to the west. Official statistics compiled by the World Health Organization set the current number of documented cases around 8,000 people, with an estimated 7,000 to 15,000 undocumented cases.

Even though the data surrounding HIV and AIDS rates in the region remains murky, most experts agree that the Pacific Islands have reached a tipping point. “Where epidemics are going is not an easy thing to predict,” says Peter Whiticar, chief of the state Health Department’s STD/AIDS prevention branch. But, he adds, without some sort of intervention, it seems likely that HIV transmission rates in the area will continue to rise.

The reason behind the disease’s rapid rate of transmission rests, at least in part, on many islanders’ assumption that HIV is either a foreigner or gay man’s disease, says Dennie Iniakwala, HIV & STI section head at the Secretariat of the Pacific Community, an organization that works with all 22 Pacific Island nations to develop economic, health and social initiatives for the future. But, says Iniakwala, not only is HIV now spreading from within the community, “almost 90 percent of the mode of transmission of HIV in the region is heterosexual.”

And, as Whiticar adds, more and more islanders are contracting HIV while traveling abroad, whether for personal or work-related reasons. What’s more, travelers often engage in riskier sexual behavior than they would at home. “When people go to different countries and there are completely different norms, they act differently,” he says. “They may put themselves at greater risk in their new environment.”

When native Pacific Islanders who have contracted the disease abroad return home, the results can be catastrophic, says Xuan-Lan Doan, the deputy director of program and planning at the Life Foundation, a Honolulu-based organization working to stopping the spread of HIV and AIDS in Hawai‘i and the Pacific. Because the islands are so small, a single infected individual can perpetuate a crisis. For example, she says, on “one of the small islands they saw that [HIV] spread because one person had 22 contacts.”

How bad is the problem?

Assessing HIV and AIDS rates in the Pacificcan be extremely challenging, Iniakwala says, because of inconsistent data collection procedures across the region. While some governments have stepped up surveillance efforts, by far the best data collection is still in the territories owned by the United States. (Six of the 22 nations are U.S. territories.) “What we are seeing is that more…cases were reported in the territories—Guam, for example—than other countries in the region,” he says. That means countries with higher documented rates of HIV and AIDS might actually have a lower prevalence of the disease than countries with weaker data collection practices.

Moving forward, Iniakwala explains, the SPC has been conducting what’s called a second-generation surveillance of HIV and AIDS in the entire region. “In each country there is a surveillance team that has been trained using the instruments that are used for the surveys,” Iniakwala says, adding that questionnaires have been printed in a myriad of local languages and dialects. Observers should be aware that if data collection methods continue to improve, there will appear to be an initial spike in the number of AIDS cases in the region. But the numbers are crucial to assessing who is at greatest risk for contracting AIDS and what needs to be done to protect those individuals.

The World Health Organization set the current number of documented HIV cases in the Pacific at around 8,000 people, with an estimated 7,000 to 15,000 undocumented cases.And even if a lot of the numbers are hard to analyze, it is clear that for at least one Pacific Island nation, crisis has already struck: Papua New Guinea accounts for 80 percent of the region’s reported HIV and AIDS cases, according to the Pacific Island AIDS Foundation website. Papua New Guinea, says Whiticar, “is truly a society in incredibly rapid transition.” Couple that intense development with high rates of sexual violence against women and poor public health, and the reasons behind the crisis become frighteningly clear.

When it comes to stopping the spread of the disease, however, the islands have one key advantage: hindsight. The Pacific Islands, explains Iniakwala, can look to other nations to see how they have addressed the threat of HIV and AIDS in the decades prior and learn from their successes and mistakes. Whether or not the Pacific Islands can—or will—do that, however,
remains to be seen.

Barriers to care
The logistics of providing care in the Pacific Islands can be extraordinarily challenging, in part, because of the region’s geographic and linguistic diversity.

A strong determinant on whether or not one receives care is the amount of government money allocated to HIV and AIDS care and prevention programs, says Iniakwala. That funding, however, varies from nation to nation. The six U.S. territories typically provide better services than the other countries. That situation can be particularly confusing in places such as Samoa, which is part independent and part American. But Iniakwala says it is unfair to criticize all non-U.S. jurisdictions. Some countries such as Fiji have “allocated substantial funding to HIV programs.”

Cruz counts herself among the lucky ones. Her medications would cost between $2,000 to $3,000 a month without state support. Comparing levels of care, however, can be somewhat arbitrary. For example, even though individuals have greater options than those in many other Pacific Island territories, they typically have fewer options than individuals here in the United States, says Ed Tepporn, HIV program manager for the California-based Asian & Pacific Islander American Health Forum. Health departments on the mainland, he says, receive significantly more federal funding that health departments in the Pacific Island territories.

Moreover, federal support has been dwindling in recent years. Following the Sept. 11 terrorist attacks, the United States government put a lot of money into preventing bioterrorism attacks, such as anthrax and tuberculosis. HIV and AIDS service providers, however, also use those facilities as clinics or laboratories to process patient samples. “The money’s drying up federally,” Doan says.

Not only do Pacific Island countries receive less funding, they also have greater needs than other countries in the world. For example, Micronesia is composed of four states, each with their own language. Finding medical staff and translators to meet these populations needs can be extraordinarily difficult, Doan says. And, because most clinics and hospitals are located in urban areas, those in rural areas often face greater logistical barriers to care. In Chuuk for example, it is a one-hour boat ride from the main island to the outlying ones.

But the onus is on Pacific Island countries to not just expand their care options, but also to improve patients’ quality of life, says Keith Wolter, executive director of the Maui AIDS Foundation. Here in the United States, he says, we have finally “shifted from helping people die to helping people live.”

Fear
Even if the Pacific Island countries managedtoovercome all the logistical barriers to care, however, they still would need to address the single greatest reason why Pacific Islanders are foregoing both diagnoses and treatment: stigma.

In many ways attitudes toward HIV and AIDS patientsin the Pacific Islands resembles attitudes here in the United States several decades ago. “I remember 25 years ago when the first article came out in the [Los Angeles] Times saying that five gay men had something funny going on and two had died and there was seven or eight or nine years of not knowing. The government didn’t want to do much. Ronald Reagan wouldn’t even say AIDS in public,” recalls Wolter.

While the stigma associated with AIDS has lessened here in the United States, the same cannot be said for the Pacific Islands. Judy, a 39-year-old Guam woman whose name has been changed to protect her identity, has yet to tell her family or friends about her status. Just diagnosed a few weeks ago, Judy is frightened and confused. She’s scared to go public because there might be some who “don’t understand what it is and they might hate me and don’t want to be around me anymore.”

Judy claims she was infected by her own partner of two years. He knew he had the disease, she says, but never told her. She only learned of his status when he was hospitalized from AIDS-related complications a few months ago. “When I first found out, I was so shocked,” Judy adds, whose partner later revealed that he was too “ashamed” to tell her he was infected. Nonetheless, Judy is trying to maintain a relationship with her partner. “I love him already,” she says simply.

Sadly, Judy’s situation is not unique. “Women make up the fastest-growing group of new HIV infections,” according to the GUAHAN project, Guam’s only nonprofit AIDS organization. Females are particularly at risk in the Pacific Islands, Whiticar says, because they don’t have “control of their sexuality meaning that men really have their way.”

According to Iniakwala, research that has looked at the second-generation of HIV and AIDS in the Pacific, indicates that high numbers of people in the Pacific Islands have multiple partners or engage in extramarital affairs.

“Here in Guam it used to be that you don’t have sex until you get married, but of course things have changed. You have to try the merchandise before you buy it,” Cruz jokes before taking on a rare moment of seriousness. “For me, when somebody tells me they love me, it’s really like, ‘Oh wow, this person loves me.” But all women, she says , even those in love, need to stay strong. Women, Cruz adds, are sometimes too “easy to manipulate.”

Danger of stigmas
The stigma associated with AIDS, moreover, makes it difficult to forge links among doctors, patients and others involved in testing and treatment process.

According to Iniakwala, part of the reas< \h>< \h>< \h>on HIV and AIDS is spreading in the region is because it has not been contained among sex workers. Prostitutes provide a particularly vulnerable group in society because they are often denied medical care, he adds, noting that medical staff are wary of treating patients who might garner the disapproval of friends and family members. Educational initiatives to halt the spread of AIDS must target everyone from medical staff, to patients to religious leaders. “We need to better understand our situation,” he says.

But medical staff aren’t the only individuals creating barriers to care. Patients, such as Judy’s partner, are often reluctant to seek medical attention for fear of losing their anonymity. Because the islands are so small, says Doan, in many cases “your aunty is your nurse.” Due to that fear, however, many patients who could have stalled the disease’s progression receive medical care only during the last stages of their life.

Wolter hopes that the Pacific Islands tap into recent technological trends that could provide a much needed shield between doctor and patient. For example, telemedicine would allow health care providers and patients to speak through an electronic medium. It’s not ideal, he adds, but it’s better than patients waiting until its time to die.

Stigmas, however, impact more than just doctor/patient relationships. Prevailing attitudes also strongly affect the logistics behind providing care, Doan says. For example, there are not that many facilities in the Pacific that can process lab results. For that reason, patient samples must often be flown hundreds, if not thousands, of miles to the nearest processing center. But patient samples have limited life spans and therefore maintaining logistical routes remains paramount to HIV care and prevention in the Pacific.

However, for a long time, regional pilots refused to carry patient samples on board their airlines. “It has to be labeled ‘infectious’ which scares everybody,” Doan explains. Whether or not samples got off a given island became very dependent on the individual pilot. “We worked on it for years. It would get better, and then one specimen wouldn’t get off the island,” she recalls, adding that the concern then became how to preserve the sample until the next plane arrived. “Planes don’t come in every day. It comes in one day, one direction.”

Doan says that it is only recently that pilots have begun consistently carrying samples. And that, she says, is progress.

Progress: not quite soon enough
But for people like Judy, progress chimes a slow tune.While Judy would like to teach others about HIV and AIDS before it is too late, she’s scared to sacrifice her identity.

Telling people about her status, she says is always “on my mind.” She adds, “It’s just that I’m not there yet, but I have that thought that I will open up and tell my children and also tell some of my friends and especially I would like to teach the ladies where I come from because they don’t understand it and they don’t know what happens to them.”

Judy says she would like to tell women, “Always use condoms when they’re having sex with partners because they never know what’s going to happen. Most men probably don’t like to use it, but…that’s the important thing to do.”

In the meantime, however, Judy feels totally alone, save for the people at the GUAHAN project, who helped her find work and provide counseling when she needs it. But Judy still isn’t sure when and how to tell her four children, who range in age from seven to 18, about what she is going through—or how to make sure they don’t go through it themselves. Referring to her oldest daughter, she says, “I want to keep it to myself until it’s the right time to tell her. She and I are very close. We really love each other so she’ll be really sad.”

Judy’s biggest fear is that she’ll die before her children reach adulthood. I always hope for the day I will read the magazine [and it will say] that there is a cure for … HIV,” she says. In the meantime, however, people like Cruz and Judy must figure out how to survive in a region that is just beginning to realize the enormity of the disease in its midst.

Source: http://honoluluweekly.com/cover/2007/01/pacific-pandemic-combating-the-spread-of-hiv-and-aids-in-the-pacific/

The curse of ignorance

2007-02-05T10:54:00.000+07:00

By, M. Abdullah Wani, Greater Kashmir, February 5, 2007

Middle aged Mukhtar was living happily with his wife Raja and two sons. He was working as a peon in a private office. Despite meager income the couple set their goals very high and got their children admitted in a nearby government school. The couple was enjoying the delights of their mutual understanding and adjustment to their hilt in spite of many day-to-day odds of life which a poor family is destined to face.

On a fateful day Mukhtar developed severe chest pain which followed by continuous cough and fever. He was beginning to feel tired and exhausted. His colleagues rushed him to the hospital where he was tested for several diseases. HIV infection was ruled out but not the tuberculosis. Mukhtar was retained in the hospital and anti-TB drugs prescribed. He showed recovery just within three days. Having heard about his ailment there was a continuous stream of friends and relatives in the hospital.

Among the visitors was a middle aged woman with a skeleton face, wrinkled forehead, frightening eyes and pug nose, the divorced wife of Mukhtar, Bibi Sundri. Mukhtar was stunned but preferred to remain silent. “Oh Raja! I could not sleep throughout the night after I heard about Mukhtar’s health. What is wrong with my darling Mukhtar”, Sundri addressed Raja. Raja burst into tears and revealed the whole episode of her husband’s ailment to her.

“Look Raja, I have understood your problem. Medication is not going to help. He is under evil effect. You get him discharged from the hospital. As soon as you do it, I will request Pahari Baba to visit your residence since he does not visit hospitals. He will cure him completely. On her advice poor Mukhtar and Raja decided to leave the hospital. Their ignorance, illiteracy and credulous nature reinforced their belief.

Next day morning doctors reviewed the condition of Mukhtar. He was preparing to request the doctor to discharge him but the doctor took the lead. Look Mukhtar, you are no more a threat for others. You can now go to your home and resume normal work but you must not stop taking medicines as will be prescribed. Any sudden stoppage can cause severe relapse. Thus the couple happily went back to their home where their children were eagerly waiting for them.

Sundri lost no time to inform the Pahari Baba whom she was visiting occasionally and this excuse gave her more frequent opportunities of meeting. On her request the Babaji accompanied Sundri to Mukhtar’s residence. Raja who was standing at the front side window of her house gazing at the beautiful trees and birds sighted both Sundri and Babaji from a distance. She informed Mukhtar and went out to greet them at the door. Thin lean Pahari Baba with a flowing beard entered the room majestically murmuring incantations. “Are you Mukhtar?”, asked Babaji. “Look, you have committed a number of misdeeds due to which you are under evil effect. It is your good luck that I am here and shall bring you out of this curse”. Then he addressed Raja, “You impious lady, go and get a glass of water”. Raja lost no time in complying with his order by placing a glass of water in front of Babaji. With her hands trembling, expecting a miracle to happen. Babaji sipped some water that was in the glass and passed on the remaining water to Mukhar whom he asked to drink it. The Baba with apparently false confidence on his face retrieved a vial, an injection needle and a syringe from his multi-pocketed bag which he carried along.

He injected out some liquid substance, administered a part of it in his own left arm and the remaining into the right arm of Mukhtar with the same syringe and needle. Soon Mukhtar felt relaxed and Baba left with a warning to Mukhtar that if he resorted to the medication henceforth, the evil effect will reappear.

Mukhtar had a deep sleep throughout that day. In the evening he rose to his feet, and, experiencing a slight dizziness upon rising, reminded himself of what the Babaji had said. Raja was there in the room. After taking brief account of Baba’s visit both attributed the Mukhtar’s deep sleep to Baba’s visit who cured him by relieving him from the so-called evil effect.

Going by the advice of Babaji, Mukhtar stopped taking medicines and apparently remained stable for some days. But it did not last long. After a few days, Mukhtar sustained a severe attack of chest pain for which he was again admitted to the hospital. At this time he was diagnosed as a case of Multi-drug resistant tuberculosis which was a direct result of premature discontinuation of medication.

Mukhtar was accordingly put on more strong anti-TB drugs which included Cyclosporin, Kanamycin and Ofloxicin. Surprisingly these drugs did not show the desired results. So the doctors decided to go for more investigations which included HIV Test also.
The doctors were shocked to find that Mukhtar had developed HIV infection.

Mukhtar was asked to recollect whether anything untoward had happened during the period. Immediately Mukhtar recollected the incident of that glass of water and injection administered by Babaji and narrated it to the doctor. The hospital administration lost no time to inform the police who launched a hunt for the Babaji. He could not be traced till date but Sundri was brought to the hospital. She too had full blown AIDS. Raja also had acquired HIV infection recently because she lived under the same roof with her husband and transmission of the virus was imminent.

Thank God the kids remained isolated and were saved but they were compelled to beg. Apprehending that the social stigma which was attached to Mukhar’s disease may cast a shadow on his business, the private office owner employed some one else in place of Mukhtar. The two ladies and Mukhtar have been quarantined and the Pahari Baba is still at large. God knows who will be his next victim.

Source: http://www.greaterkashmir.com/Home/Newsdetails.asp?newsid=3624&Issueid=138&Arch=

Zimbabwe: From HIV Victim to Aids Activist

2006-12-11T09:27:00.000+07:00

By, Rose Thamae, Zimbabwe Independent (Harare), December 8, 2006

I AM the founder of a community-based organisation in Orange Farm, South Africa, called Let Us Grow providing home-based care and support to people living with HIV.

We also train peer educators among the youth who work night and day to reduce the spread of HIV in this desperately poor community.

Two years ago, during the month of August -- Women's Month in South Africa -- we staged a vigil every night that a woman died as a result of an Aids-related illness in our community as a way of demanding the roll out of anti-retroviral drugs or ARVs.

We were out there every night: in other words, at least 31 women died during that period.

But our campaign succeeded and now we have an ARV site. The number of deaths has been reduced to about two a month. I care for others, as I care for myself. I became HIV positive as a result of a gang rape.

I know, in the most painful way possible, the link between HIV and Aids and gender violence. I tell my story, over and over again, to get the South African government to provide Post Exposure Prophylaxis (PEP) to survivors of gender violence in the hope that others will avoid the fate that befell me.

I tell my story to heal the pain of a life punctuated at every turn by violence, yet redeemed by the power of turning anger into activism. This is not only my story: but the story of three generations: of me, my daughter Mpho, and my grand-daughter Kgomotso.

I was born on February 17 1953 in Orlando East. My grandmother told us that my mother left us when I was three years old, because my father was very abusive. I had four brothers. Three have passed away and I have only one left.

I was raped at the age of nine by my father's friend. He took advantage of me because I was alone and he knew my father was not home. He came to the house and told me I must go with him to find my father. He took me to his place where he raped me.

It was 10 in the morning. I was young I could not understand what this man was doing to me. There was no one in his house. He ordered me to lie down, so that he can lie with me while we were waiting for my father. I did. He was my father's friend and I trusted him. As I lay down, he raped me. He kept on saying be a good girl I'll finish right now.

While he was raping me there was a knock at the door. It was my grandmother, calling my name. He opened the door and ran away. My grandmother grabbed me and asked me what he had done to me. I told her what had happened to me. They took me to the police station. I was then taken to the doctor. I had to be taken several times because I contracted a sexually transmitted disease (STD). I don't know what has happened to this man. No one told me anything. My grandmother... everyone... kept quiet.

If my mother had been around, maybe she would have given me support. I was on my own, I was all alone. I was not allowed to ask any questions especially in those days. I had to wait for people to tell me or ask me how I felt. I think that's why my father's friend took advantage of me, he knew I would obey him.

When my uncle (my father's youngest brother who was jailed with Nelson Mandela and Robert Sobukwe on Robben Island) came back from jail my grandmother told him what had happened.

She asked my uncle to find out where my mother was.

After these long years he finally found my mother who was married to another man. She agreed to take us in. To me it was a victory to find my mother. As time passed my life began to change.

I was called names, Le tla le pepiwe, vezandlebe which means I'm not the child from that family. I had one half-sister. Whenever there was a family gathering they treated me like a joke. I was like a slave to them.

In 1970 I had a boyfriend and in 1971 I gave birth to my daughter. When my daughter was four years old I was raped again by five boys behind Orlando Stadium. My friends and I were coming from the stadium. They managed to run away. I was not so lucky. I didn't escape: they raped me. I went home and told my family. They said it was my fault: why didn't I run away like the others?

I have never had peace in my mind. I lived because I had to live for the sake of my daughter. I tried to go on with my life. Another boyfriend tried very hard to make me happy.

One day, as we were coming from the cinema, very happy, a gang of young men, carrying pangas and knives pounced on us. My boyfriend ran away and left me with these monsters.

I tried to fight, but I was stabbed in the back and in my head. I lay there with blood all over me. They raped me one by one. They had no mercy at all. No one could hear me screaming as it was an open space. After gang-raping me they left me there.

I managed to make my way to the police station and found my boyfriend there. The police asked me what kind of a boyfriend leaves his girlfriend behind. They blamed my boyfriend. They did nothing to help us. My family blamed me.

Two years later in 1990 I was diagnosed as HIV positive. The world was falling apart. Telling my story made me feel strong. I keep telling my stories again and again to my kids, to my friends, to my neighbours, to the world. I have learned that if bad things happen to you it is not the end. I find strength in my work. Each week there is a funeral to attend. But there is also a life being saved; a new lease of life being given.

* (This story is part of the I Stories series produced by the Gender Links Opinion and Commentary Service for the Sixteen Days of Activism on Gender Violence).

Source: http://allafrica.com/stories/200612080969.html

OPT: No friends, few drugs and little expertise for AIDS patients

2006-12-08T10:33:00.000+07:00

By, IRIN PlusNews, December 7, 2006

GAZA CITY - The manner in which 14-year-old Mahmoud (not his real name) was infected with HIV was unusual - but the subsequent reaction of Palestinian society was all too predictable.

"I got it from a blood transfusion when I was 12. Now, no one talks me. My friends all left me when they knew that I'm AIDS patient. I feel I'm alone in this world. They are afraid to get infected from me, as I was infected, but it is not my fault that I have AIDS now," said the youngster from the West Bank.

"I'll never finish college. I'll never have a family like the others. I will never have babies. I also believe that it will not be long before I leave this world," he added.

Mahmoud is one of 36 people known to be living with AIDS in the Occupied Palestinian Territories (OPT), according to the Palestinian National Authority (PNA). Altogether, there have been 61 recorded cases in the West Bank, Gaza and East Jerusalem since 1987, with five times as many men infected as women, according to Ezzat Gouda, a doctor and director of the sexually transmitted diseases (STD) unit at the Palestinian Ministry of Health.

Twenty-five of those infected have already died, Gouda said. More than half the existing patients are described as being heterosexual, two as bisexual and one, homosexual. A further 11, including Mahmoud, were infected during blood transfusions. Three were infected from injecting drugs.

Gouda added that efforts by Palestinian health care providers and institutions to help patients, were not coordinated, and provided patchy cover. "It is necessary and urgent to have a national plan for STD and HIV services in Palestine," he said.

Social stigma

Gouda heads the Palestinian National AIDS Programme (NAP), established in 1998. He told IRIN/PlusNews that officials may not know the true scale of the problem in OPT because the social stigma attached to AIDS in the Arab world prevents people from reporting to the medical authorities.

In a situation unique in the Middle East, the stigma attached to AIDS in the OPT means positive Palestinians are both automatically denied entry into Israel for security reasons, and identified by Israeli intelligence services as potential informers, according to an Israeli non-governmental group, Physicians for Human Rights Israel (PHRI).

The Shin Bet, Israel's security agency, believes that the stigma of having AIDS in Palestinian society means people living with it are more likely to be coerced into carrying out an attack to reestablish their family's reputation, PHRI said.

"There have been instances where the weakness and desperation of sick Palestinians were exploited in recruiting them to carry out attacks within Israel," PHRI wrote in a report in October. "The Shin Bet also exploits exactly these things to recruit them as collaborators and to wring information out of them."

Israeli security sources denied to IRIN/PlusNews that they employed such broad profiling criteria when dealing with sick Palestinians wanting to enter Israel.

Islam a shield to AIDS

Many Palestinians believe they will not be infected by HIV because Islam takes a hard line on some of the practices by which the virus can be spread, like homosexuality, sex work and intravenous drug abuse. "The Islamic religion stands as a shield to AIDS. If we follow Islam's instructions, AIDS will never be a problem at all," said Sheikh Taysir Tamimi, the Palestinian Chief Justice.

According to Palestinian health director, Gouda, Palestinians who travel to Israel and abroad are more exposed to the virus - there are an estimated 4,000 people living with HIV/AIDS in Israel, according to a UNAIDS survey in May, which did not include an estimate for OPT.

Some efforts to spread AIDS awareness have been made by the Palestinian authorities and the United Nations Works Relief Association (UNRWA), which looks after Palestinian refugees. But both organisations spend most of their time grappling with the more immediate crises affecting Palestinians, Gouda said.

Though HIV-positive Palestinians are treated for free, antiretroviral drugs are not always available, he said. "We depend on the donation of drugs, national and international. So we have many problems in view of Israel's siege and repeated closures of the Palestinian territory. In some cases, patients were suffering unnecessary illness because they had no drugs or were denied access to Israel."

Mahmoud and Palestine's 36 other HIV/AIDS patients continue to suffer from a lack of expertise among medical staff, Gouda said. "The lack of trained medical staff and social workers for counselling and psychological support in the field of HIV/AIDS also stands as a grave constraint," he added.

Israel and Western nations slapped an aid embargo on the Palestinian government, after Palestinians democratically elected Hamas in January - the pressure is aimed at getting Hamas to renounce violence, and to recognise Israel's right to exist.

Israel says Palestinians have their own government to blame for the aid crisis.

aq/ts/ed/ar/cb/oa
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Kenya: The Unsung Heroes of the Aids Pandemic

2006-12-05T09:39:00.000+07:00

By, Lillian Aluanga, The East African Standard (Nairobi), December 2, 2006

The scourge has destroyed the family structure, leaving grandparents to care for orphans,

Mama Rispa Amuom and her granddaughter, Iska Anyango, 13, in Nyalkinyi Village

Ms Paulina Awino is hungry. It is well after 2pm and she has had nothing to eat since morning.

For more than two hours, she has been lying under a tree outside her hut, away from the scorching heat in Homa Bay District's Kogelo Kalanya area - hoping.

Awino is hoping for many things. She is hoping that God will give her more years to take care of her grandchildren, that her aching back will give her a moment's peace and that her grandchildren return home before dusk.

She is also hoping that a Good Samaritan will drop by with some little flour or omena for the family's evening meal. But most of all, the octogenarian is hoping for a miracle. She expects a miracle that will result in the development of a cure for Aids, to end the suffering of millions.

She knows only too well how devastating Aids can be. There was a time she had 11 children. Now she has none. At least five of them died from Aids related complications.

All she has now are memories of her children and the eager searching faces of her four orphaned grandchildren whom she has been raising for the past three years.

Awino is one of an increasing number of elderly people bearing the brunt of the effects of Aids in a continent that accounts for over 60 per cent of more than 38million global HIV infections.

Mama Maria Ogende who takes care of her orphaned grandchildren in Kogelo Kalanya village.

Ever since the first cases of Aids were reported in the 1980s scientists have worked overtime, conducting studies, running trials, developing tools of prevention and striving towards finding a cure. Reduced infection rates, access to ARV treatment and prevention of mother to child transmission of the virus have all been achieved in more than 20 years of battling the disease. But behind these gains lies the devastation the virus has wrought on families.

At the sound of her grand daughters, Emily Akinyi and Makril Adhiambo, returning home from the river, Awino struggles to sit up. She slowly raises her head from her 'pillow' - the bottom of what was once a straw basket used for storing grain - and rests her bony hands on the sides of the reed mat she has been lying on.

"My back has been aching for a while but there has been no money to go to hospital," Awino says, beckoning her granddaughters to her side.

Her face lights up as she fusses over the children. Are they tired? Had they found something to eat? Did they get enough water? The children obviously adore their grandmother and snuggle close her. She is the only 'parent' they have left.

"I am too weak and old to work. If I had the strength I would do all that I could to see that these children never sleep hungry and that they get a good education," Awino says.

Hunger has been a constant companion for Awino and her grandchildren. Tea is a luxury that rarely graces the table and Awino has taken to jealously guarding the little millet flour saved from the last harvest. They must not "waste" it. That means that porridge is also rare.

Akinyi, a shy girl of 13, recalls the last time she tasted chicken. It was last year, during Christmas when a neighbour brought them some, all in the season's spirit of good cheer.

Awino is haunted by the fate of her grandchildren when she dies. She stares at the clear skies as if seeking for some assurance but there is none. She shields her eyes from the sun and surveys the compound for a while. The weather is no longer favourable.

Not too far from where Awino sits, some whittling stalks of maize sway in the wind just a few metres away from a huge boulder where a green tunic has been spread to dry. An agulu (a large earthen pot used for storing water) stands outside her hut, half empty.

Mama Pauline Awino and her orphaned granddaughters Makril Adhiambo, eight, and Emily Akinyi, 13, at Kogelo Kalanya village, Homa Bay District. Awino, who is ailing, is the breadwinner of the family.

"My daughters are dead. I know it is Aids that killed them. Had they been alive, we would not be sleeping hungry," Awino says resignedly.

She does not know her age but says she was born at a time when the Europeans were fighting a 'big war'. Her neighbours estimate it was sometime just before World War One. "I pray everyday and ask God to give me some more time so that I can take care of these children until they are grown," Awino says, as she smiles at Adhiambo, eight.

Source: http://allafrica.com/stories/200612041207.html

Doctor fights odds to ease AIDS epidemic

2006-12-04T13:37:00.000+07:00

By, Alphonso Van Marsh, cnn.com, December 2, 2006

TAUNG, South Africa - In a country plagued by AIDS, a doctor in this remote industrial area of Taung, South Africa, is quietly providing life-prolonging drugs and hope for people who are HIV-positive.

"I saw too many of our people dying," Dr. Vanga Siwisa said, explaining why he gave up a comfortable life and medical practice in the suburbs of Johannesburg for this small town.

His office in the Taung Public Hospital is far from fancy: A ratty sheet partially covers an examination table, and posters hung with strands of medical tape cling to the wall. An air conditioner groans. (Watch how Siwisa gave up his lifestyle to fight AIDS )

But that simple office occupied by Siwisa, who was recently named "Doctor of the Year" by South Africa's Rural Doctors' Association and the South Africa Academy of Family Practice, is a life-giving center.

At this clinic -- which Siwisa started from scratch two years ago -- thousands of people infected with HIV can receive life-prolonging anti-retroviral drugs.

Access to anti-retroviral drugs is a necessary component of effective HIV/AIDS treatment, according to the World Health Organization. When the drugs are given in combination, they stop the HIV virus from replicating within the body, and delay the deterioration of the immune system and onset of AIDS, according to the organization.

Lowering the high mortality rate of AIDS in South Africa -- nearly 1,000 people die of it each day -- largely depends on this treatment, according to a report from the Actuarial Society of South Africa and the Medical Research Council. (Watch an uphill battle to stop AIDS )

But as of September, only 213,828 South Africans with HIV are receiving anti-retroviral drugs, says the country's health minister.

That's out of the 5.4 million people who were infected with HIV by the middle of this year, according to estimates by the government and the Society of South Africa and the Medical Research Council.

So when health minister Dr. Manto Tshabalala-Msimang advocated so-called "superfoods," like garlic and lemon, as an alternative to drug treatment for HIV, it caused an international uproar, ridicule and calls for her resignation.

Tshabalala-Msimang was effectively replaced by South Africa's deputy president as spokeswoman for the government's plan to fight HIV/AIDS -- but retains her ministerial post.

Siwisa, 65, is careful not to disparage South African authorities. "For this disease, it is true we started late. We should have started around 1999 or 2000. But I wouldn't say it's too little, too late," he said.

Before his clinic, he said, "Most people were just coming in with AIDS-defining illness and probably dying in the hospital."

'I don't know where else I would go'
Indeed, his clinic, the first in Taung, a town about 300 miles northwest of Johannesburg, has signed up 2,876 critically ill patients for HIV/AIDS treatment for an anti-retroviral drug rollout program. Nearly 2,000 of them are already on anti-retroviral drugs.

"Patients tell me, 'Hey Siwisa, you know when you first came here I was almost dead? Now you can see I am alive,'" he said.

His clinic is a battleground for the fight against HIV/AIDS. The infected line up in the early morning hours. Those healthy enough to work tend to a vegetable garden on hospital property, and reap some of what they sow. It is part of Siwisa's philosophy that nutrition should accompany, but not be an alternative to, anti-retroviral drugs.

Every open space of the clinic seems to have a chair with somebody sitting, waiting. Grandmothers, middle-aged men, a young mother carrying a newborn baby -- all wait to have their blood drawn, their bodies weighed, and ARV drugs dispersed at the makeshift clinic pharmacy.

It's loud and chaotic -- this is a public hospital after all -- but there's a sense of dignity among those who were otherwise shunned by their communities when their HIV-positive status became known.

"I don't know where else I would go. Without Dr. Siwisa and the clinic we'd have nothing, no one to assist us," Miriam Ganabo said. The frail 42-year-old woman learned she was HIV-positive last year, and she's now receiving anti-retroviral drugs and nutritional food parcels from the clinic.

Some patients say the clinic and Siwisa are a godsend, but Taung's anti-retroviral rollout program is far from perfect.

"We are understaffed. We are all suffering from burnout because everybody is a jack-of-all-trades," Siwisa said.

It is difficult for rural public hospitals to recruit talented medics like Siwisa, the province's Department of Health admits. The salaries are low, and a lack of a social life or decent schools for children deter many. Siwisa said the clinic needs social workers, pharmacists and professional nurses.

"The department recognizes and values the huge contribution Dr. Siwisa has done. We need people of Dr. Siwisa's caliber, people who are committed to serve our community with pride, particularly in rural areas," says Nomonde Rasmeni, the Department of Health's top official for the province.

Such recognition may not be enough to keep Siwisa in Taung. He said the struggles of running the clinic and lack of social opportunities have taken their toll.

"I doubt I will stay beyond 2007, unless something drastic happens but I doubt it," Siwisa says. "My social life has been suffering for too long. I have to live again."

But his legacy -- and clinic here in Taung -- will continue.

Source: http://www.cnn.com/2006/WORLD/africa/11/30/safrica.aids/index.html?section=cnn_latest

To live with HIV

2006-11-27T10:55:00.000+07:00

By, ABS-CBN Interactive, November 27, 2006

I know her as Rhina. Though she hides behind aliases and only agrees to be seen as a silhouette—or precisely because of it— she is every woman. And she is positive for the human immunodeficiency virus.

"I came out to impart to fellow OFWs and to everyone—youths and adults—that HIV/AIDS is here and that they should get proper information regarding HIV/AIDS so that they can prevent infection," she explains. The virus is now among the general public. It has gone beyond risk groups such as homosexual men and prostitutes. It is all our concern.

She notes, "It is also because here in the Philippines, there is also discrimination. Affected families still do not fully accept relatives who are HIV positive."

Rhina emphasizes, "Regardless of what I am, I still have purpose. Life, despite sickness, goes on. I want to give an example to those people who still hide that they should not fear or feel ashamed. It was not our intention to be infected with HIV." "Perhaps God has a mission for me. That’s why I’m still here."

Rhina not only survives; she dares live her life.

In the years following her infection, she met, feel in love and married her husband, who like Rhina lives with HIV and works for Positive Action Foundation Philippines Inc., an internationally recognized and supported non-government organization dedicated to people infected and affected by HIV/AIDS and their families and significant others, for which she has been working with for almost six years.

Rhina and her husband even braved willfully having a child of their own, a second for Rhina and the first for the couple. She conceived her eldest daughter before her infection and the child does not carry the virus. Her youngest child, only four months old, has yet to be thoroughly tested for HIV.

"It was our choice as a couple to have a child. My husband has been widowed twice and it is his first child. He’s very happy to have a child. Should the day come that he passes away. . . . My husband has had HIV for 12 years," Rhina explains.

Though there is still no cure or vaccine for HIV and AIDS still kills, current antiretroviral drugs slow down the replication of HIV, allow one’s immune system to recover and allow for a normal life. However, Rhina and other like her need to take ARVs for the rest of their lives and still need to take precaution against transferring the virus. Rhina receives her ARV free from PAFPI for which she has been working with for almost six years. ARVs are available in various hospitals as far away as Cebu and can cost P6,000 a month.

ARVs, when combined with other interventions such as infant formula feeding and cesarean section to prevent transferring the virus through blood or mother’s milk and prophylaxis for the infant after six weeks, can cut the risk of transmission to below 2 percent—this according to the World Health Organization’s "Antiretroviral Drugs for Treating Pregnant Women and Preventing HIV Infection in Infants" published in 2004. These facts and more Rhina knows all too well. Still, she declares, "Faith is number one. Hopefully, with all our prayers, my baby tests negative."

Rhina, a provincial woman who attained a junior high-school education in Manila, speaks with many HIV/AIDS advocacy terminologies enriching her highly articulate Tagalog vocabulary. "Discrimination," "affected families," "disclosure" and "indigents" are a few of the English words that she uses as she discusses in the vernacular. She corrects me, clarifying that she does not have AIDS, the end stage of an HIV infection when the immune system has been degraded by the virus to a point where it can no longer fend off opportunistic infections. She and other advocates emphasize that they are not "AIDS victims" or even "AIDS survivors." They are people living with HIV/AIDS.

In person, she is plump, apparently healthy with smooth skin. She recalls weighing several belt sizes thinner when she was still sickly. She credits the support and acceptance of her firstborn daughter as much her treatments for her renewed health. She speaks softly with a measured cadence, yet clearly and directly. This is but a one of many interviews for her. As a volunteer for PAFPI, she testifies for a living. It is now her work to confess her life so that others may learn and live.

Among her kin, only her mother, her husband, her daughter and a few relatives know her condition. "Some in the province know because I had the courage to disclose my status. I need to tell them despite their lack of full understanding because time will come when I will need their help. And they will find out eventually," she confides. If Rhina’s vocabulary is the indicator of her awareness, then the reach and depth of her disclosure is the gauge of society’s acceptance.

"The community has yet to know," she confides.

She admits, "Before I was diagnosed, even I discriminated against persons with HIV. All I knew back then was Sarah Jane [Salazar]. I would say, ‘that person has AIDS. Disgusting. She’s probably a bad woman.’" Salazar was the first person to publicly admit her HIV infection in the Philippines. She died in June of 2000.

"When I first learned about my infection, it was hard to accept. I didn’t know anything about HIV then. I wanted to be alone. I wanted to commit suicide. I felt my soul had already left my body. All my dreams crumbled. I didn’t know where to go or who to talk to or how to tell my family. I was afraid they would be disgusted with me," Rhina recalls.

In the book For Good: Life Stories of Filipino Migrant Workers Living with HIV/AIDS published by Action for Health Initiatives in 2004 before the birth of Rhina’s youngest child, she has told her story through another alias: Sharon. In the book, she narrates her story:

She grew up in the provinces with her two half brothers raised by a single mother who worked as a nightclub entertainer. Her father, a communist insurgent whom her mother fled just before their wedding for his philandering as well as his violent nature, later tracked them down and returned to their lives. For a time, she lived with her mother, her father and his female lover all in the same shanty home. Both parents were physically abusive. Despite her parent’s strict supervision, Rhina dated boys in high school. Her father was later murdered while on assignment in another province. This allowed her mother to move to Manila.

At age 17 while still studying for third year high school, Rhina decided to apply for work abroad as many of her neighbors did. She did so illegally, being under-aged. She gained employment in Qatar with physically and verbally abusive family. During this time she had a series of boyfriends in Manila and upon her return was sexually active.

She gained employment abroad again, this time in Malaysia, where employers were more humane. Rhina also began to enjoy her life, often going to discos though it was forbidden in her contract. She even fell in love with a Malaysian named Steve, yet another violation of her contract. Rhina became pregnant with her first daughter. It was only after conception that Rhina uncovered Steve’s married life. She had to leave her employers as she entered her third trimester; beyond that they would soon find out about her pregnancy—yet another violation of her contract. She moved in with Steve and gave birth to her firstborn in Malaysia in 1997. Following the Asian economic crisis, Steve lost his job and started taking drugs. Six months after the baby was born, Steve disappeared. With no money to pay for rent, electricity, water or a ticket back home, Rhina went hungry. Her friends were able to raise funds to send her home.

Fending off a marriage proposal from a boyfriend in Manila while struggling to make ends meet, Rhina decided to work abroad again, this time as a legal documented OFW in Dubai where she worked for a young couple with a baby. When her female employer went for a trip to Saudi Arabia with her baby, her male employer raped her repeatedly at knifepoint over several days. It was through him that Rhina acquired HIV. Later, Rhina was able to divulge part of the abuse to her male employer’s best friend, who would ask her to do chores for him to distance her from her male employer. When the wife began to suspect her husband’s rape, the man began to beat up his wife as well. With his best friend’s help, Rhina, the wife and her baby later escaped. Her female employer even filed charges against her husband. However, Rhina’s employment agency in Dubai discouraged her from filing a case.

Rhina’s story since has become a continuation of abuse and insensitivity.

She recalls, "The [job placement] agency whisked me away. I didn’t know my rights as an OFW and woman. They immediately dropped me off at my home because they didn’t want me to report the incident. Had I known, I could have filed a case, I would have fought for my rights."

Rhina only discovered she had contracted HIV when she applied for work abroad yet again. She recalls, "I had diarrhea and fever for almost one month starting a week after I arrived. When I tried applying for work abroad again to Malaysia, they took my blood sample at a clinic without any pretest counseling. They didn’t explain that they would run an HIV antibody test. I was just waiting for my medical exam. I already had a visa. They told me they would confirm the findings with a hospital. I didn’t understand it at first. I was offended by their questions.

They asked how many men I’ve had sex with. I was insulted I asked the nurse who accompanied me what my sickness really was. She whispered ‘HIV.’ My best friend [a fellow female OFW] who was with me had to explain it was [the virus for] AIDS. I had to have my counseling in another hospital."

When Rhina applied for indigent status to avail of substantial discounts for her medical expenses, it required an interview with the Department of Social Welfare and Development. There was no privacy during the interview despite Rhina’s entireties for confidentiality. When she did disclose her HIV status, the social worker blurted it out within earshot of her officemates. Rhina felt violated.

Despite such rough treatment, there are also institutions that cared for her. It was PAFPI that provided counseled, supported, informed and later employed Rhina. "I was just a walk-in. A volunteer, a fellow OFW and PLWHAS, had given me her card and told me to come. In June 2002, I traveled to Malaysia upon the invitation of Coordination on Action research on AIDS and Mobility-Asia to make a presentation on HIV Vulnerability of Migrant Workers. During this trip she gained closure from Steve. Rhina has since changed firstborn’s citizenship to Filipino, who was originally registered on her Malaysian birth certificate as belonging to Steve and his wife.

It was also while working with PAFPI that she met her husband. "I met him in the hospital while conducting visits for the NGO," she recalls. "I thought he was my type but back then he had a wife and he looked like a playboy," Rhina confides.

When his wife died due to HIV-related illnesses, her husband later became a volunteer for PAFPI. They became the best of friends and love soon bloomed. After living together for a year they decided to marry in 2003. A Catholic priest wed them regardless of the inadvertent disclosure of their HIV infection. "My husband still had fever from his trial ARV back then. I told the priest he was sick. My husband thought I had told the priest everything. So he made a full disclosure," recalls Rhina.

Today, people who care and who are aware surround Rhina. However, she still experiences prejudice even from health professionals. "I didn’t like the counseling of my first pediatrician," admits Rhina. "What now if you infect your baby?" the doctor asked her in a very judgmental and moralizing manner.

"It is our right, our option to have a baby," declares Rhina. She adds, "As patients, we receive counseling. No parent wants his or her child to have HIV. But doctors have no right to tell us to stop. We have right to live a normal quiet life and kids." Rhina sought another pediatrician. Her current one has been very sensitive to her circumstances, simply offering her options without any moral judgment.

She explains the various considerations they weighed before making the decision to have a child. "We thought of the possibility that the baby would test positive [for HIV]. As a couple we thought we would accept whatever God’s wills.

We saw how other people living with HIV had kids who tested negative. And we took into considerations the medicines now available. In the end I trusted my faith in God."

Despite her faith, Rhina is all too aware of her precarious situation. "This is the difficulty of the volunteer. Work in an NGO will not last a lifetime. What if the organization is no more? What if there’s no more budget? True employment is difficult. With our status, there’s a limit to what we can do. We can’t endure too much hard work or fumes," she explains. "I hope people become more aware. I hope they accept us and not turn us away in disgust," Rhina hopes.

Her thoughts turn to her daughter: "My daughter had a PCR [polymerase chain reaction] test on October 23 and she tested negative. If she tests negative again on the second PCR, she’s free from the virus." PCR tests detect for the genetic material of the virus. Secondary PCR tests on infants are often conducted on the sixth month. Rhina hopes for the best.

Hope is infectious. It travels farther, faster and deeper than any virus. I give Rhina a hug before we part ways. Hope is the one thing everyone carries away with when they witness Rhina lives her life.

Source: http://www.abs-cbnnews.com/storypage.aspx?StoryId=57408

Grandfather of six thanks ARVs for saving his life

2006-11-03T15:14:00.000+07:00

By, Jan de Groot, Sunday Times (Johannesburg), October 1, 2006

Eighty-year-old Jan de Groot, who learnt he was HIV-positive at the age of 67, writes about living and coping with Aids

THE year is 1993. The occasion is my donating of blood to the Natal Blood Transfusion service. The result is that I am not allowed to give blood and that I must see the office.

The outcome is that I am infected with the HIV virus.

I am a white male, at the time 67 years old, a grandfather with six grandchildren, and I know very little, if anything, about HIV.

Questions arise: When did I get it? How did I get it? Why did I get it? Who do I tell? In retrospect, one advantage is that I did not have to decide whether to get tested or not: I was faced with a fait accompli.

I was told: ôYou have been HIV-positive for at least three years.ö

My previous donation was in 1990, when the virus was detected. But apparently they couldnÆt get hold of me ù I was living in Botswana at the time.

It takes time to come to terms with this devastating information. First I started reading up on the virus: the treatment (at the time, nil); coping mechanisms (nutrition, drugs, smoking, alcohol); what societyÆs reaction is; and what the church thinks about it.

I read books: When Bad Things Happen to Good People, by Rabbi Harold Kushner, gave me most of the answers. As a Christian, the Bible says I am forgiven for my sins. Why did I feel that I had sinned and that this was GodÆs punishment? OneÆs mind-set! We inner- stigmatise ourselves.

I went backpacking for a year. I went to Indonesia, Malaysia and Thailand, learnt to meditate, did a massage course and worked in a hospital for Aids patients. Coming back to South Africa, for me it was important that my secret got out in the open.

I discussed this scenario with my daughter and son. ôGrandpa has got Aids!ö This was 1994, remember.

Another advantage for me was that I had just retired and I did not have the fear of job discrimination.

I joined a support group. I was invited to be part of a programme called Break the Silence, where about 50 people told their stories and these were published with our photos. I gave Aids-awareness talks to church congregations, a few factories, and I started work with the Aids Foundation of South Africa.

I have lived a reasonably healthy life. I knew that garlic was excellent for its anti-bacterial properties ù this was known already by the Egyptians 3000 years ago. So this became part of my diet. I had come across a pamphlet, advocating lemon juice, olive oil and cayenne pepper to assist oneÆs immune system after chemotherapy and that this could be applied to people with Aids.

I had a publication from a nutritionist from Stellenbosch University about the African potato, which could help strengthen oneÆs immune system (it had to be discontinued after about six months, so oneÆs liver could recover).

It is advisable to remain on a healthy diet as long as possible, before getting ARVs. I cycled and walked every day. I cycled in Holland and did hiking trails in Greece and the Tatra Mountains.

I also helped with food parcels and visits to the dying in the informal settlements around Durban. I attended conferences, toyi-toying with Zackie Achmat of the Treatment Action Campaign. The TAC managed to get our ARV medication on a generic list, at a third of the price.

Come June 2001, I had a mild cough, a slight oral thrush and I lost my appetite. Garlic and some medication did the trick against the oral thrush, but I kept on losing weight and becoming weaker. I went to McCord Hospital for an X-Ray, but they couldnÆt find anything ù no TB. I was put on a drip, and that helped just a bit.

By October 2001 I was very sick. I moved to Johannesburg, where I was looked after by my son (who has a family with three small children).

A couple of doctors later, I was operated on to have a gland removed from the top of my left lung. Finally TB was diagnosed ù by that time I had lost at least half my weight, could hardly walk and, to top it all, my youngest grandchild also had TB.

To be properly treated I had to find frail-care facilities, which I found in Durban. My doctor had put me on TB medication and at the same time on a new combination of ARV medication. My CD4 count at that stage was about 50 and my viral load was a figure with six zeros.

When I was admitted to the frail-care facility, my daughter in New Zealand phoned my friend virtually every day to find out if I was still alive, and should she fly out? For the months of November and December 2001, I cannot remember very much. I was on TB treatment for eight months.

I survived this experience. If I had been poor, I would not have survived. The medical cost of the operation alone is over R10000 and the frail-care facility is very expensive.

My doctor in Johannesburg was marvellous. He had to eliminate various causes (I was diagnosed with prostate cancer in 1992 and I had suffered a mild heart attack in 1996).

It is now 2006. I am well again. I am 80 years old. My CD4 count is 600. My viral load is undetectable. I am back at the Aids Foundation (thank you for having looked after me when I was so sick). I am back at church (thank you for visiting me and giving me spiritual support). I have been to New Zealand to visit my family (thank you for the ticket).

Without the ARV medication I would not have survived. There are many side effects from ARVs ù skin rashes, diarrhoea, depression or peripheral neuropathy. It is expensive and you have to take your medication every day, some with food ù even on holidays, when you are inclined to forget to pack your pills. You have to be monitored for side effects, your CD4 count has to be taken at intervals, so does your viral load.

But it is better to put people on ARVs and let the bottlenecks in the health-care system sort themselves out at a later stage. If we wait to make the system foolproof, we may have many deaths on our hands.

DonÆt get Aids. After at least 10 years of Aids awareness programmes, most people must be aware of the choices.

Why are we so scared to be tested? Legislation is in place to prevent employees from being fired if they are HIV positive. If one knows oneÆs status, one can plan.

Lastly, the male of the species must undergo a mind-set change: any sexual act has consequences and men must take full responsibility and not leave the outcome to the women.

Go well and live positively.

Half Century: Turning Fifty Hasn't Detracted From Surviving AIDS

2006-11-03T14:57:00.000+07:00

By, Matt Sharp, Test Positive Aware Network, October 2006

My fiftieth birthday came and went with no particular symphonic fanfare or 4th of July fireworks that one expects when they reach the half-century mark. Besides the mood of my day being tainted by George Bush's creepy sixtieth birthday the day before, I was expecting those feelings a PWA is supposed to have when they reach fifty. But I felt anything but celebratory. I just felt, well ... old.

Cards and gifts have been less forthcoming as I have gotten older, but it didn't make me feel better that at fifty I only received one card, one gift, one belated e-birthday card and a well-intentioned dinner party where half the invitees didn't show. Where was the Mediterranean villa with tubs of champagne and caviar? I got no dancing boys at fifty! At any rate, the casual attitude didn't make me feel it was supposed to be a special birthday.

Several people tried encouraging me by saying that I am fortunate to have survived to fifty. But I wasn't encouraged much that day. My feelings were more about aging than a victory in surviving AIDS for 18 years. I'd probably be having a much better fifty had I not had AIDS in the first place. Truth is, my perspective on turning fifty was screwed up because of my near quarter century of fighting AIDS. I wasn't quite prepared to reach this milestone.

Don't get me wrong, I never thought I would reach forty when I tested positive in 1988 at the ripe old age of 32. I should be dead, according to the testing counselor who gave my ill-fated result. Still, every day I mourn my community of brothers and sisters who didn't live to see 28 AIDS drugs and HAART (highly active antiretroviral therapy). Now that I have survived at fifty I can reflect on life as a half-centurion as almost any person would, AIDS or not. I can turn fifty now and know that I will most likely lead a normal lifespan of wrinkles, gray hair and a failed social security system. Yech.

Being fifty and HIV-positive is no joyride in our society, where young looks and good health reign supreme. As a single gay man it is even more challenging trying to meet guys when everything is based on "disease free" and "18-45 only." (Oops, five years over.) The whole Internet-based scene is a scam anyway, as so many people lie in order to market themselves, especially for sex. People say anything to get what they want online. Guys reject you if you disclose your status when you could just lie and they'd never know. Totally weird and dangerous!

Obviously, HIV is not over for me simply because I turned fifty. I am by no means out of the woods. My 18 years of HIV has been a constant battle staying ahead of the antiviral resistance game. Recently, I missed out on a new drug trial that was my last best hope of controlling my rampant, resistant virus. The university stalled too long and the study never began. Now I have to wait another two months for the expanded access program to open. So staying ahead of a resistant virus will always be my agenda, but will a cure come before I die?

The newer drugs are appearing to be better for treating resistant HIV and there are hints that at least people like me will live to the old age of ... sixty? Who knows? All the pitfalls of turning fifty and beyond can at least be celebrated because of the miracles of research into HIV and activists who have fought and died and never had the chance to reach fifty. For those who did not survive I will celebrate my fifty in their memory.

But I'm not sure how I'm supposed to feel anymore turning older. First I had to grow up, then I tested positive, and now I'm old. It has been a long fight for me to survive HIV, but perhaps I am taking survival for granted now that I have been lucky enough to reach fifty.

Reaching this age has led me to think about new prospects on living and getting some real perspective as to why I am still here. Surviving with AIDS to 50 and beyond will take more guts, more fortitude, and more commitment. Turning fifty hasn't detracted from surviving AIDS, it just created a new opportunity to reflect, stay strong, and gain steam for the next 50 years. An old ACT UP comrade of mine helped to keep the struggle of survival in perspective by saying, "Keep Your Eye on the Prize."

24 Years Old and Changing the World

2006-11-03T14:21:00.000+07:00

Interview by Laura Jones with Todd Murray, The Body, San Francisco, California

Todd Murray has been on Earth barely as long as the HIV epidemic itself, but he has already left his mark in the battle to end it. Diagnosed with HIV four years ago at age 20, Todd has helped found two nonprofit agencies dedicated to addressing the special needs of HIV-positive people under 25: Hope's Voice, a national organization, and Positive Hope, a global HIV support community with members in two dozen countries. As Executive Director for both agencies, Todd uses his own experience as a young adult with HIV to motivate people of all ages to create HIV support services in their communities, and to reduce the number of new HIV infections by providing quality HIV education and support to all people, regardless of their age, gender, skin color, risk factors or HIV status.

Todd is currently on a month-long speaking tour with the "Road to Hope" tour, a nationwide educational campaign that is the result of a collaboration between Hope's Voice and the Student Global AIDS Campaign. "Road to Hope" speakers will provide HIV education and testing at colleges and high schools across the United States, and introduce the Hope's Voice "Does HIV Look Like Me?" awareness campaign nationwide as it travels. For more information on the tour schedule, visit the Hope's Voice Web site at www.hopesvoice.org.

GOING PUBLIC

Who have been your mentors? Who do you look up to, and why?

First would be my parents, who made me who I am and taught me to stand up for myself and to work for what I want to see in the world. Second is Pedro Zamoros -- when I was growing up and watching MTV, his was the only face and voice of HIV that I had. I dedicate a lot of my work to his bravery. He was the first and only one doing what he was doing for young people, and even now there are so few youth doing what he did.

Really, though, everyone who has fought this same fight is my hero. That includes the activists who founded ACT-UP, and lots of the civil rights heroes. I believe HIV is a civil rights issue; I see a lot of parallels between our struggle and the struggles of other civil rights workers in history.

What made you decide to speak out publicly about your HIV status?

After I was diagnosed, I went through a long period of time where I didn't think about it or look in the mirror or anything. I felt a deep sense of shame and regret, because I'd made a decision that turned out to be a mistake. But everyone does that -- everyone makes that kind of mistake. I wasn't going to go back in the closet, so to speak, and keep secrets from everyone -- and I was tired of seeing my friends become HIV positive, tired of sitting around and watching it happen. It's a tragic situation, but I don't believe I need to live a tragic life.

What do you think is unique about your story?

My story is not really a unique story at all. It's a lot like the story of all the other 24-year-olds who are living with HIV, and that's exactly why it needs to be told.

What do you think is unique about the audiences you try to reach when you speak out?

Well, my agency speaks to everyone. When I look out at an audience, it's not one color or gender or sexuality. Lots of programs target specific groups. While I believe that needs to happen to some degree, our programs aren't built just for one population. We want everyone who comes in to feel connected -- that's our mission.

What's the best thing about sharing your story with others?

People realize that HIV/AIDS affects them. I could go to a class and talk and give statistics and all that, but when you talk with students about their world, they leave feeling respected and educated. One-half of new infections are in young people under age 25 -- we're losing the battle, and we need to get real! When we speak with students, they do feel connected. We get e-mails and letters; they feel a personal connection to HIV/AIDS. I met a young woman tonight who still thought you could get HIV from sharing a glass of water. She now has a connection and can protect herself and educate others.

What's the worst thing about sharing your story with others?

I think the worst thing is that you might rather be more selective about who knows you're HIV positive. When you're that much of an advocate that's not really an option. That can be emotionally challenging -- so few people are out, so everyone comes to you for counsel. Some days you just want to feel normal and to be able to have some privacy.

What do your relatives feel about you speaking out?

I don't think it's easy for them. I do know that most of my relatives know, and my immediate family is concerned and worried -- they call me all the time to make sure I'm doing okay and I'm healthy. They also know that I've always stood by what I think is right, and they believe the same things that I do, so they are very supportive of my work. I couldn't do it without their support ... like I said before, my mom and dad raised me to be the way I am. I'm also inspired by my siblings. My sister is 21, a good mother and a good friend. My 12-year-old brother was born with special needs, and his attitude is "You can let it get the best of you, or you can get the best of it!" That's an inspiration too.

What do the people you date feel about you speaking out?

Well, anyone I date knows what I do, so they run if they can't be supportive, right? It's one of the first 10 questions that's asked on a date: "What do you do for work?"

What have you learned since you began speaking openly about your HIV status?

I think the main thing I've learned so far is the power of the human spirit, and the willingness of people to see the best in even the worst situations. I know that sounds corny, but it's true. I took for granted a lot of the best things in my life, like my family and friends and access to decent healthcare. It's humbled me to have all those blessings available to me now that I'm dealing with all this as an HIV-positive person. I feel focused and moved to make a difference. I'll never say I wanted this, because of course no one wants it. But I believe all things happen for a reason, so I can continue to live and not let anything stop me from going forward with my plans and my dreams.

DIAGNOSIS

Can you describe your feelings when you were first diagnosed? Did you feel differently a few months down the road?

I get that question all the time, and it's overwhelming to try to put it into words. I was 20, healthy, strong, honestly, I thought I was the last person who could be HIV positive. I felt shock, despair, regret, loss of my will to live ... and there were times when I also felt happy.

The biggest feeling was this sense of being absolutely alone. I was only 20 years old, with HIV, and I felt like no one else my age was going through this and no one would understand and I'd have to go through it all alone. It's important for me to remember those feelings now, so our program can make sure no young person who comes to us has to feel that way. I needed someone I could relate to, and I want to provide that now.

It was a roller coaster -- I think that's the best way to describe it. It was an emotional roller coaster, and it led me to some crazy places. I feel like I lost that whole first year after I was diagnosed, and that's just such a waste. No one should have to walk out after diagnosis feeling alone like that.

How long do think it takes to really process the diagnosis?

Oh, it can take one day, or it can take 10 years. It just depends on the person. It depends on their beliefs about HIV, and what's going on inside them -- it has a lot to do with what's already inside. Having a face and a voice to put with HIV would help.

Any tips for those who are newly diagnosed?

You are not alone! This is not your last day; you are going to wake up tomorrow. There are people out there who are living and following their dreams, and you should do the same. Use everything you have to your advantage -- get educated, talk with people. Pay attention to what you're doing to your body and don't let life slip by.

What do you believe is the biggest risk factor for anyone right now?

Complacency. "That won't happen to me,""I'm too healthy to get HIV,""I only had sex once." Whatever lets people believe that the whole rest of the world can be affected by HIV, but not them. The complacency is the scariest thing I see.

What do you think is the first thing someone who has just found out they have HIV should do? What's the second thing?

First, you need to know that you have a choice: You can ignore HIV or you can take care of yourself. Second, find resources for yourself. You have to initiate contact with whatever can help you, whether through e-mail or a web site or an AIDS organization or talking with a person. You have to learn to be your own advocate -- get educated, and talk with someone you can trust. Cry if you have to. There's nothing wrong with crying or saying "I'm afraid" or getting help.

If HIV were a person, animal or object, what would it be? Why?

I think it's like the ocean. Some days are rough -- it's stormy and the waves are rough and you don't know if you're going to make it. But there are also days that are calm, when you wake up feeling like you can handle it.

What do you think is the biggest problem facing HIV-positive people today?

The general lack of understanding and compassion towards the HIV positive. There's a stigma; we're treated like lepers. I don't look at it any different than cancer, really, and people with cancer are treated with respect and compassion. But we're still fighting for that compassion.

What is the biggest change you'd like to see in HIV care?

There's still real horror stories from the medical community. I read about people having to move across the country in order to get adequate care; I hear about young people whose nurses won't touch them. I heard recently about a 22-year-old man who was admitted to the intensive care unit, who knew this was his last night. He was crying all night for his mother and his boyfriend. The nurses wouldn't even sit with him and hold his hand. That's not a death with dignity, not by a long shot. The medical community needs to have a lot more understanding and compassion for us.

What's the biggest change you'd like to see in HIV education?

In education, well, where to begin? There's a major lack of adequate sexual health education in this country. There's at least one state where it's illegal to say the word "condom" in schools -- what's that about? Condoms are not about religion. Condoms are about protection. Our agency calls for progressive, comprehensive education in the schools. Parents need to look at their children's textbooks, because a tiny minority is making the education decisions for everyone right now. The strongest schools are those that talk to their students and make sure they're getting what they need, the same way an agency will talk with their clients to make sure they're getting what they need. We all have to get involved with the schools!

When you look into your crystal ball, what do you see in the future for people living with HIV?

At this point, I don't know. At this point, we're in a lot of trouble. There's a movement starting and all my work right now is to move that along, but I don't know where it's going to end up. All HIV-positive people need to get loud so everyone can hear us. Maybe 10 years from now, those who are making decisions for HIV-positive people will be in a better place than they are now. There are days when I think it's going to be okay, but there are also days when I don't.

How do you maintain a positive outlook?

You can either laugh or cry, I choose to be positive about it. People look up to me, and I work with amazing people who do amazing work, and we're doing a good thing together. I surround myself with loving, supportive people, and the feedback we get from the students helps too. I'll be having a bad day, and then get a call or email from a person who's been affected by my work, and that helps me keep my perspective.

TREATMENT

What was your first CD4 count and viral load count? What is your current CD4 count and viral load count?

Oh, I have no idea what the first ones were. I know I was not in need of medication at that time, though. I'd rather not say anything about my current counts.

What HIV treatment have you been on, if any?

I haven't been on any medications.

How often do you see your doctor? How did you choose your care providers?

I see him every three months or so for my baselines. A friend of mine referred him to me.

What kind of relationship do you have with your care providers?

It's good! When I'm speaking with students who are going into medical fields, they always ask me, "What can I do to make healthcare better for people with HIV?" I tell them, "Give your patients five extra minutes." Although it'll add an hour onto their day if they give five extra minutes to 10 patients, it makes a huge difference. My doctor takes that five minutes to check in with me about my life and my work before we get down to the nitty-gritty about why I'm there, and that's part of why I stay with him.

Do you have any health or wellness regimens that you feel helps you stay healthy?

I try to stay balanced and I try to keep a positive outlook. Living a balanced life is the major thing. I work out, eat well and try to keep a good mindset. I want to let my body and my mind fight the virus for now before I try anything man-made. I'm young and real healthy and got diagnosed early, so that's what I'm doing for now.

DATING/MEETING NEW PEOPLE

How has your dating experience been since you were diagnosed with HIV?

Oh, dating! Well, for me it's been relatively easy because I'm an activist. I don't wear it on my sleeve, but I'm so out about my status because of my work that most of the people who ask me out already know.

What is your strategy for meeting new people?

I don't really have a strategy. I guess if I did, it would be "The right person will come along." I guess for me, dating partners have just happened -- usually at the most inconvenient time, I might add. I haven't really worked at it, because I'm always meeting people.

How soon do you disclose your HIV status to the person/people you're dating?

Most of the people I date I meet through activist work, so most of them already know I'm positive. If they didn't already know, I'd do it right away. That's what any activist does. It's much harder to be left by someone you know well and care about than by someone you barely know.

Any tips for dating that you can share with other people who are positive?

I think the main thing I want to say is "Be proud." Being HIV positive doesn't mean you're not going to be able to have good healthy relationships. Be honest and be proud. Too many young people think that when they find out they have HIV, their dating life is over and they're going to die alone. That's not true! Don't give up on your dreams or your plans for your life. If your dream is to have a partner and a family, you can do that.

AWARD

What was your first reaction when you were told you'd received this award?

Shock! I love the work I do and I'd do it for nothing. To be honored for doing that work is a huge thing. I hope it'll bring more recognition to what we're doing and cause more people to call us to come into their schools.

Who would you dedicate this award to, if you could?

I dedicate it to all the young people who are fighting the same battles I am.

PERSONAL

Could you share a little personal information about yourself?

I don't know what to say, really, so I'm just going to plug Hope's Voice. This is our Mission Statement: "Hope's Voice is a national HIV/AIDS organization committed to promoting the education and prevention of HIV/AIDS to young adults. Hope's Voice uses open dialogue and peer-to-peer education, through both speaker appearances of young adults living with HIV/AIDS and progressive programs to send a crucial message: HIV/AIDS does not discriminate. At Hope's Voice we aim to raise awareness and help young adults create the social change that is needed to end this epidemic." If there's any young people out there who are willing to be open and share their experience with other youth, they should give us a call.

Where did you grow up?

I grew up in Salem, Oregon. In a bubble.

What did you want to be when you were a kid?

Oh, I wanted to be a lot of different things. I think the biggest one was to become an adoption advocate.

What kind of work do your parents do?

My mother is a homemaker. My father is a dentist.

What kinds of work have you done?

Well, before all this I did a lot of accounting, credit analysis and general accounting. I did that for quite a few years.

Who were the most influential people in your life, both professionally and personally?

I'm so close to my family. I can't think of many people besides my family. I couldn't do this work without them.

What do you like to do in your spare time?

Other than work, you mean? I play piano, and I love to dance and travel. Mostly I just like to be with the people who are important to me, my family and my close friends.

Do you have any children?

I don't have any yet, but I want them. I've always wanted to be called "Dad," and that's something I'm looking forward to in the future.

Pets?

No. I know I'm a gay man and everything, but I'm not real pet-friendly.

Where do you live? Describe your community.

I live in San Francisco, not in the Castro but in a lively, diverse neighborhood. It's a progressive community and I love living in the city with all it's craziness and fun.

If you could live anyplace besides where you live right now, where would you live?
I'd like to live overseas sometime. There's parts of Europe I can see myself living in. I'm a mover by nature, so I'll get there eventually.

What's the biggest adventure you've ever had?

This tour! Definitely this tour, right now! It just gets more and more interesting as the days go on and May 7th won't be the end of it, I know that already. This is just the start of a long adventure.

What are you currently reading? What book or author, if any, has had the biggest impact on you?

Just a while ago I read this book called Gay Dads. I'm 90% sure that was the title, but I can't remember right now. Anyway, it reaffirmed my desire to be a father and to go through those struggles to have a child.

What kind of music do you like? Which artists do you listen to the most, and who has had the biggest impact on you?

I pretty much like any kind of music that gets me up and makes me move. There's no one kind I especially like or dislike.

Anything else you'd like the people reading this article to know about you?

My final words? My final words to young people are just that you're not alone. With half of all new infections taking place in people under age 25, we all have a role to play. It's our crisis to face, and everyone has a role to play, even if that's just educating yourself and talking with your partners. Stay strong, and know we're here to stay. Hope's Voice will exist as an agency for young people as long as there's an epidemic going on.

http://www.thebody.com/hivawards/winners/tmurray.html

Niyongamba, A 20 year-old Rwandese woman

2006-10-11T11:49:00.000+07:00

by HDN Key Correspondent Team- a statement from the 10th SWAA (Society for Women and AIDS in Africa) International Conference on AIDS, Kigali, Rwanda, 24-28 July 2005

MY NAME IS NIYONGAMBA MARCELLIN, AND I AM 20 YEARS OLD: WELCOME TO MY WORLD.

I am a Rwandese high school student. I am living with HIVAIDS. If you think living with the virus is challenging, you are not alone. My life is full of constant struggles.

You see, I thought accessing antiretroviral (ARVs) drugs would signal the end of my tough times, but I have realized that it was just the beginning of a long journey. I have had to concentrate on my studies even when I am at my lowest, when I have opportunistic infections. The process of schooling is a tough equation, add serious withdrawal effects from the medication and a hostile school environment and it adds up to a challenge.

I am very happy to be in school, but it is hard when other students do not understand why you have HIV. They think it is your fault and therefore mock you. They give us nicknames and laugh at us when we get some skin infections. They may even shun you, and that feels bad.

Stigma is bad in school, especially when you have to keep asking for permission to get medication. That means you miss out on important classes, yet you need medication to survive in a boarding school. It means that you stay healthy but miss some of the teaching.

The school administration does not always understand. Apart from needing time off to get medication and rest when side-effects have taken their toll, we need clean water and a special diet. Unclean water will accelerate opportunistic infections that may be water borne, while some food we take in school is not exactly good for our well-being.

I know that a proper balanced diet is good for my health because it will boost my immune system. With good food, I know I do not always have to take medication; therefore good food is important to me.

This is my daily situation: At times I have no money to see a doctor. It is good to have one doctor who monitors my situation, but it is not always easy to access such services with no money.

If this is tough, can you imagine a student in a boarding school, struggling to perform well in class, take care of their diet, deal with other students who are not always friendly, constantly leave school to get medication, and keep the sponsors of his or her education happy? On top of all that, there is a point to prove in society - that all students have a right to education.

I have a family - but I have friends who are orphans, head their households, and also have to go through school. At times money for school fees is not available, let alone money to pay bus fare to get medication. That is when we come together and encourage one another and hope that society will understand our plight.

I get my ARVs from TRAC [Treatment Research and AIDS Centre], that saves me a lot of trouble and I can concentrate on my studies and deal with the other challenges I face. I know there are other students who would like to access medication but have no chance. I hope the situation can improve and more students are able to access ARVs and other forms of care.

I am happy that I will be joining Don Bosco in Kibungo, one of the best schools in Rwanda. For me, it is such an achievement, and I hope to excel.

[The original statement has been slightly modified for editing purposes.]

Source: HDN Key Correspondent Team, email: correspondents@hdnet.org

Trinidad Immigrant, Lesbian, Mother of a Child with HIV

2006-10-02T13:25:00.000+07:00

The highly energetic and talkative Michelle Lopez has a lot to say for herself as a mother, a lesbian, a trauma survivor, and a woman living with AIDS. Michelle emigrated from Trinidad at the age of sixteen, and has made her home in New York City ever since. Diagnosed with HIV after the birth of her second child, Ms. Lopez fought the loneliness and isolation that accompanied that diagnosis and became not only an advocate for herself and her daughter, but for other immigrants and women living with HIV. Empowered by her own boldness and desire to understand and survive HIV infection, she now advocates for some of the most vulnerable members of the HIV community, including undocumented HIV-positives.

Michelle Lopez is also busier than hell. Her job as Access to Healthcare program coordinator for the Community Healthcare Network takes her to parks, shelters, and WIC centers throughout New York City in search of disenfranchised people in need of HIV care and services. In the past 13 years, she has been involved with over 40 different organizations, either in an advisory or board capacity. In 1996, she organized with other community activists to form the Bronx Lesbian & Gay Health Resource Consortium. She joined the board of directors for Bronx AIDS Services in 2000, and worked with other mothers throughout New York City to found JUST KIDS, a not-for-profit serving children affected by HIV and AIDS. All this she does while raising her children and speaking out through various media outlets as a lesbian mother living with AIDS.

GOING PUBLIC

Who have been your mentors? Who do you look up to, and why?

Oprah Winfrey. Oprah's been such an inspiration to me -- we come from different backgrounds, but we're both so determined to survive and win. She's a fighter, and only the strong survive.

What made you decide to speak out publicly about your HIV status?

Well, I became jealous! The gay white male population was getting all the attention and support, because they were the ones that were speaking out. I'm a feminist and women with HIV weren't getting that help and acceptance, and I didn't think that was fair.

The other thing was my daughter's diagnosis -- I was thinking "Great, she'll be another female who'll just have to deal with this on her own." She'll be 15 in June, and she's doing well, by the grace of God.

What do you think is unique about your story?

My boldness! My boldness and braveness. Most immigrants are intimidated by the immigration laws in this country, but I take another bold step as an immigrant every time I see something else horrible happening to someone who's HIV-positive. Speaking out is therapeutic for me -- it helps me clean out the junk. How can we create change if we won't be bold? Networking is the most tremendous resource we have in immigrant communities -- we need to foster relationships and build community for HIV-positive people.

What do you think is unique about the audiences you try to reach when you speak out?

They're immigrants and women. Their voices aren't heard often enough in the HIV community.

What's the best thing about sharing your story with others?

Inspiring other Michelle Lopezes. I've seen it happen -- I speak out, and I inspire another woman who is just like me. Speaking my truth is part of a healing I'm going through, and by doing so I can share the light and see other immigrants come out.

What's the worst thing?
Oh, there's that "Madonna Syndrome," you know what I'm saying? And there's repercussions. People get scared; they say "You can't say that! You're not even a citizen!" And it's hard on my children sometimes. They have difficulty with their peers sometimes because of what I do.

What do your relatives feel about you speaking out?

They think I'm breaking the cultural norm. My mom, she says "Where does she get this from?" I get it from her! I get it from you, Mom! She doesn't see it in herself, but she fights in her life too. It's all about breaking cycles for me. There's generations of incest and trauma in my family, but I'm breaking that cycle. That hasn't happened to my kids. That cycle is broken.

What does your partner/spouse feel about you speaking out? Has she spoken out in any way as well?

I'm single right now. I was in a relationship for seven years, but now I'm single by choice and just being a parent. In my last relationship, I ended up feeling like I was being repressed -- my girlfriend had this attitude like "You should be happy to be with me because you're HIV-positive and who else would want you," you know? And I was like "Nononononono! No, you should be happy I disclosed to you!"

What have you learned about yourself since you began speaking openly about your HIV status? How has speaking out helped you, and how have you changed as a result?

That I am Somebody. Now what does that mean? What is "Somebody?" It means I can make a difference, love and be loved, share! I love Michelle now. I love just being Somebody!

DIAGNOSIS

Can you describe your feelings when you were first diagnosed?

When I was first diagnosed, I felt so scared, just petrified. Immediately I was thinking "Oh my God, they're going to take my kids! They're going to deport me!" I didn't know where I was going to go to get help. I actually saw an ad on the train (for Community Healthcare Network), and I went over there and they helped me out.

Did you feel differently a few months down the road?

Oh yeah.

How long do you think it takes to really process the diagnosis? Any tips for those who are newly diagnosed?

It's very individual. Some people can be 20 years out and still can't accept it. Now me, you give me lemons and I'm gonna make some damn good lemonade. If HIV is an elephant in the room, then I'm gonna move that elephant.

My piece to those who are newly diagnosed is this: Get connected! You are not alone -- don't segregate yourself or feed into that feeling of being alone. I wouldn't wish this virus on anyone, but it's about living, not dying.

If you want to, can you share you believe you acquired HIV?

Unprotected sex with my daughter's father. He's in denial still. He's not in my life now -- I have to worry about my daughter, not about him. Any bitterness or anger I had is gone, though; I just got rid of it. I have to live my life.

What do you believe was your biggest risk factor?

Unprotected sex with men. Girl, I'm not a CDC-defined lesbian! I'm a curious girl!

What do you think is the first thing someone who has just found out they have HIV should do? What's the second thing?

Seek out support resources! Do your research! Find an HIV specialist, infectious disease doctor, HIV services agency, everything -- it's not just about meds. It's about your mental health too! You gotta deal with disclosure, your family, the whole life you were already dealing with. You take the life you were dealing with before you were diagnosed and you add HIV ... Boom! Really, you're going to need other people for support, so go find those people.

The second thing? Live your life to the fullest! Just live! Now, that doesn't happen overnight -- it's one day at a time, just like with substance abuse. So the more resources you can access, the better it's gonna go for you. There's such a vast menu -- you gotta go out and connect the dots, meet people and learn from others, put it all together and apply it to yourself.

If HIV were a person, animal, or object, what would it be? Why?

Huh ... well, I was just talking about that elephant, wasn't I? So I guess it's an elephant. And elephants can be very damaging, but once you understand that elephant, you can find ways to live with it.

What do you think is the biggest problem facing HIV-positive people today?

Stigma! This disease is so stigmatized, and if we don't address that we're in trouble. People talk now about it being a "chronic illness" and all, but it's not diabetes -- oh no! You can see the reaction in people's faces when you disclose. I was just talking about this at a leadership forum recently -- we need to stop that!

What is the biggest change you'd like to see in HIV care? How about in HIV education?

Getting consumers more educated and involved in their care. So many HIV-positives are still so disconnected from that partnership with their doctors, and consumers really need to join in. Doctors aren't God! We have an opportunity to work together, and it can be very rewarding to have that kind of impact on each other. Realistically, we have to level that playing field between the infected and the affected.

When you look into your crystal ball, what do you see in the future for people living with HIV?

A cure. Really, I see a cure. I have such a connection with my spirituality, and we're gonna have a cure. If we keep talking with people and we get people connected and talk about the meaning of it and how to put everything we know together, we'll have the cure.

How do you maintain a positive outlook?
I can have a positive outlook because I've really found out who Michelle Lopez is, and I love her. And I can help other women find out who they are, and once we can all do that we can all love ourselves. I have to uncover and get rid of all the trauma from my life in order to get to me, and I can do that. I am living!

TREATMENT

What has been your overall experience with HIV treatment so far?

It's been an adventure, let's just say that. Yes indeed. I get mad when I see those mountain-climbing ads, but I have climbed me some mountains! There's that other ad where they're all on the beach, you know? When I'm on the beach, I'm thinking "Where's the bathroom?" But it's not just about me -- I have to work with my daughter to make her take her meds too. It was so hard: "Oh God, she's throwing up and I have to make her take these pills!" But you know what? At age 12, she fought with her doctor about her pill burden! She did! She walked into his office and she said "I am taking too many pills! You find me a study and get me into it now so I can take less pills!" And he did -- she was part of the Emtriva (FTC, emtricitabine) study. She's her mother's daughter; she knows how to negotiate. She teaches me things, oh yes.

What is your current CD4 count and viral load count? What was your first CD4 count and viral load count?

My current CD4 is 790, and my viral load is below 50cpm.

They didn't have the viral load when I was first diagnosed, but my CD4 was 327. And that was very traumatic. But I started learning about my illness and my care right away -- I was already an educator by the time the viral load test came along. Adherence means a lot to me, and it's less of a burden if I have support.

What HIV treatments have you been on, if any? Give dates, CD4 counts, and viral load counts, and the toughest side effects you've faced on treatment.

I was on the early things, so I've been on ddI (didanosine, Videx), d4T (stavudine, Zerit), 3TC (lamivudine, Epivir) -- that's still part of my regimen, the 3TC. I was on monotherapy, 800 mg of AZT (zidovudine, Retrovir), and my nails turned black and fell out and I went anemic and had to take Procrit (Epogen, epotein). And Sustiva (efavirenz)! I checked myself into the psych ward when I tried Sustiva because I was seeing talking unicorns, and that was when I was awake! One of my co-workers has erotic dreams all the time now from Sustiva, though -- she won't give that Sustiva up for anything!

How often do you see your doctor? How did you choose your care providers?

Here we have the "Special Needs Plan [SNP] -- [note: this is commonly referred to as SNP]," which is Medicaid managed care for HIV-positive people in New York state. I just started recently with my new doctor. He wants to see me once a month, because I have a lot of gynecological troubles. I'm going to see him on Wednesday and he's gonna kill me, because I was supposed to get bloodwork done and I didn't yet. I'll get it done in the morning before I see him, okay?

I chose him myself -- I need a specialist because I have gynecological problems related to childhood abuse, so I researched him. I read up about him; he worked with Anthony Fauci at the National Institute of Health! Everyone who's on the SNP can do this -- you call up [New York Medicaid CHOICE Program (1-800-505-5678)] and get the providers directory. A lot of people just sit around after they get assigned their card, but you can choose your own doctor out of the directory. So everyone should do their research and pick the doctor who's going to work out best for them.

What kind of relationship do you have with your care providers?

It's a partnership. We're gonna be the best of friends once we get things worked out between us. He told me "The hardest thing between you and me right now is when you don't do what I say you should do," but that's how I am sometimes. We're going to work it out, though.

Do you have a health/wellness regimen that you feel helps you keep healthier?

I take care of my mental health. That's a big thing for me -- I have my up days and down days. I'm on Zoloft (sertaline) right now, but I think I'm having some kind of breakthrough with that, so I'm going to try Wellbutrin (bupropion).

Any adherence tips for other people on treatment?

The key is this: Fewer pills = less toxicity. Learn about each regimen, and find the one that's going to work best for you. Aim for the best suppression with the fewest pills. Before, my doctors were choosing my regimen for me, but now I do my own homework and I'm picking my own regimen based on that research.

DATING

If you are single, how has your dating experience been since you were diagnosed with HIV?

I'm single by choice right now. None of us are perfect, but I'm meeting people with just a little bit more shit than I want to deal with these days, a little more baggage than I want to deal with. Lesbians with HIV are so closeted -- it's such a not-talked about, shameful thing. Better you should get it from shooting up than have to say "I had sex with a man!" Like I said, I'm not a CDC-defined lesbian! I'm a femme and I'm proud and no one can take my experiences away from me. I'm not ashamed of nothing.

What is your strategy for meeting new people?

For me, I just go out. I'm such a people person, and I love being around women. And I have such a thing for butches! I scope my victim, and then I just flirt -- I love flirting. I do my little thing, you know. I'm going to be Miss April in the next issue of SHE Magazine, so you all just watch out!

How soon do you disclose your HIV status to the person/people you're dating?

I disclose my HIV status to people I'm dating as soon as I meet them. I'm so public -- you can be driving down the street and see an ad and it's like "Oh! that's Michelle!" So if they don't know already I just tell them. The night my old girlfriend and I met, we were at a bar and we went outside to talk because she said, "I want to get to know you." I told her I was HIV positive, and she was like "Why are you telling me this?" And I said, "You said you want to get to know me!" And the next day, my Ricki Lake segment was playing on those TVs in downtown Brooklyn, so she'd have seen it anyway if I didn't tell her.

I have nothing to be ashamed of. I don't have a tattoo on me that says "HIV positive," but I'm gonna educate. Plus you have to bring up the conversation at some point -- I know what I've got, but I don't know what they've got.

Any tips for dating that you can share with other people who are positive?

Don't let HIV be an issue. Again, it's a disease. YOU are not the virus! There are wonderful things about all of us that we tend to forget, so get to know people and let them get to know you. Don't use sex as a way to get to know each other, either, but don't be afraid to have sex. Just get the issue out of the way early so you don't have to deal with the fear of being rejected -- if they can't deal, say "Alright, Darling!" and move on.

AWARD

Who would you dedicate this award to, if you could?

My daughter. She's such an amazing person. She teaches me things all the time. You know she was in the pharmacokinetic study that enabled pediatric dosing of Viracept? She was five when she was in that study!

PERSONAL

What did you want to be when you were a kid?

I wanted to be a journalist. I'm not one right now, but I'm so about talking to people -- Oprah, look out! I so see myself as someday having this healing show for women, not just women with HIV but all women who come from traumatic histories who need to heal. So many of us come from such traumatic shit, and people just want us to be about HIV instead of all the other complicated stuff that got us to where we are. We are not a virus! We are women.

What kind of work do/did your parents do?

My mom was a court reporter and did administrative support for the courts. My dad was a longshore foreman.

What kinds of work have you done?

Oh, computer billing, UPS, public jobs. Anything that gets people to talk with me. I love psychology, and that aspect of working with people. I did not want to be a nanny, not me! That made me feel so oppressed -- that's the first job immigrants do, being a nanny or a housecleaner, and I just said "No! I'm not doing this!" I graduated from school in Trinidad; I knew typing.

Who were the most influential people in your life, both professionally and personally? Why?

My spiritual mother, Rev. Donna Faria. That woman has such a level of tolerance and acceptance, and she's been so supportive of me and my family, so loving. And Oprah! I've already talked about Oprah. She just needs to come out of the closet now, that's all.

What do you like to do in your spare time?

Oh, shopping! And I play tennis, and I love reading. Reading gives me a chance to steal away into my own little world for a while.

Children?

My son Rondell is 18, and my daughter Raven is 14.

Pets?

No pets. I had a little Chihuahua named Charlie, but my best friend adopted him so we still get to see him. Eventually I'll have another Chihuahua and a beautiful bird.

Where do you live? Describe your community.

Our part of the Bronx is mostly Hispanic and African American. It's a working-class area where most people own their houses. Before we moved here I lived in a housing complex in another part of the Bronx for 14 years. I like it here -- it's close to the water.

If you could live anyplace besides where you live right now, where would you live?

There's this neat part of Brooklyn I'd like to live in -- it's a residential neighborhood with all these beautiful Victorian houses. I like to walk around that neighborhood and imagine myself living there.

What's the biggest adventure you've ever had?

Being diagnosed with HIV.

What are you currently reading? What book or author, if any, has had the biggest impact on you?

Right now I'm reading Chicken Soup for the Sister's Soul. The author who's had the most impact on me is V.C. Andrews, even though she's only imaginary.

What kind of music do you like? Which artists do you listen to the most, and who has had the biggest impact on you?

I like contemporary jazz, and tango. I love the steelpan drum; I'd like to have one of those. Those are Trinidadian, and come from when the slaves got their freedom -- that's freedom music.

Anything else you'd like the people reading this article to know about you?

I'm afraid of driving. Here in New York City you don't really need to, and I'm so Miss Daisy about it. I've never had a license and I'm so not motivated to drive.

Source: Interview with Michelle Lopez by Laura Jones

http://www.thebody.com/hivawards/winners/mlopez.html

"Living With AIDS"- Thembi Ngubane

2006-09-21T14:44:00.000+07:00

Five million South Africans suffer from HIV, the virus that causes AIDS. This makes South Africa the hardest-hit country in the world. Fully three-quarters of new cases are girls and young women between the ages of 16 and 25. One of those women, Thembi Ngubane, agreed to record an audio diary of what it's like to live with HIV. Thembi, who is 20 and lives in Khayelitsha, a wind-swept township outside Cape Town, spent long hours reflecting on what it's like to have an intruder in her body and how her life has changed since she was infected. In collaboration with independent producer Joe Richman of Radiodiaries.org, FRONTLINE/World presents "Thembi's Story," in a format that is new for us, what we call a Direct Voice Dispatch.

The Trespasser

Every morning when I wake up I run off to my drawer, take out the mirror and look at myself. Then I start to do my prayer. I say it every day, every time when I'm feeling angry, like how when you are angry at someone, you always have that thing inside you that you need to tell that someone what you feel. I say, "Hello HIV, you trespasser. You are in my body. You have to obey the rules. You have to respect me. And if you don't hurt me, I won't hurt you. You mind your business, I'll mind mine. Then I'll give you a ticket when your time comes."

I never thought I would worry about HIV and AIDS. It was the last thing on my mind.

I'm going to tell you how I was infected. I had this boyfriend, then we broke up. I went my way, and he went his way. A year later I heard that he died. When I went to his house, his family was gathered there. I said, "What happened? Was he shot? Was he stabbed?" His sister told me no, he was sick. I said, "What?" She told me he was very thin, and he couldn't talk, then all of a sudden he just lost a lot of weight. Then I asked her, "What if he had AIDS?" She said, "I don't know." That's when I started to get real worried.

I decided, OK, I'm going to go for a test. I went to the clinic. They bring all of the equipment in front of me and just prick all of my fingers. Then 10 minutes passed by. The counselor came back and said, "We need to have another one." He started to do another one and another one. They did all my five fingers, and I started to worry. I kept thinking, Why is he testing me five times? Then he said, "OK, now it's time for your report. When your blood looks like this" -- he pointed at the test results -- "it means you have the virus. You are HIV positive, and you've been positive for many years."

I just stared at him and said, "OK."

Now I'm considered stage 4. When you are stage 4, you are no longer HIV positive anymore. They say you've got AIDS.

The doctor told me I was very much at risk of getting sick. He said it's like swimming in a lake where you have crocodiles. You can swim for some time without getting bit, but if you stay for a long time, at some point you're going to get bitten.

Getting Sick

For a few months, I stopped recording. I didn't want to hear my sick voice. I didn't want people to see me like this and hear me like this. I couldn't even look in the mirror -- the way that I looked, my face was sort of becoming like bones and dark, and my eyes were kind of big, and I was shaking. I couldn't walk. All the things that were happening, I thought they would never happen to me. And my boyfriend, Melikhaya, was very, very worried. He would plead with me to go to the hospital, but I didn't want to go. I was afraid of the way people were going to look at me. People would stare and start to point, "Look at her, look at her."

I just wanted to hide myself. Then my mother showed up. When she came into the house, she stared at me because the last time she saw me I was fine, and now I'm thin like this. Than she said, "Child, why are you like this?" I just looked into her eyes -- she was very afraid. I looked at her and said, "I don't think I'm going to live long." And she said, 'OK, don't worry. I'm going to take you to the hospital." Then she put me on her back and took me to the hospital.

A few weeks later, I visited another doctor. His name was Dr. Abrams. He asked me how I was doing. I was coughing. I told him, "I have pains in my neck and in my head." He took some blood and looked for signs of infections. He tapped on my chest and told me it was dull and hollow in there. He told me I was too thin and very short of breath. Then he told me I needed to be on ARVs, to bring down the virus count.

I am very lucky to be in a community that supplies ARVS because in some areas they are not available. "ARV" stands for "anti-retroviral." Anti-retrovirals are medicines that help to fight the virus. You must take them for the rest of your life.

Relationships

My boyfriend's name is Melikhaya. We live together. We've been together for two years. Everyone knows we are very close. If they see Melikhaya, they see me. He met me and I met him and that was it. I remember when I found out about my HIV status -- it was very painful to tell him. I thought, What if I've also infected him? Now I've ruined my life, and I've ruined everybody's life.

He doesn't want to blame me. He says that I didn't chase after AIDS. He tells me he loves me and to just be strong. And then he teases me: He jokes that my biggest fear is that if I die first, he'll find another girlfriend.

Now I have to tell you something that will come to you as a surprise. Melikhaya and I have a baby. Onwabo is almost a year old. She has many toys.

"I thought, At least I will have a child to leave behind, even if I die. And my family will see me in that child. I just wanted something to call my own, something to live for."

When the doctor told me that there were things they could do to help prevent the baby from being infected, I decided I wanted a baby.

Onwabo is fine. We gave her a drug called AZT when I was in labor. [By using AZT and other drugs and by not breastfeeding, the transmission rate can be reduced dramatically.] She's been tested, and she is HIV negative. At first I didn't want people to know that I was pregnant. I felt I didn't have the right to have a baby. I thought if I had a baby, maybe in the hospital they would arrest me. Sometimes I think maybe it wasn't the right thing to do, but I just wanted it so bad. I thought, At least I will have a child to leave behind, even if I die. And my family will see me in that child, everyone will see me in that child. I just wanted something to call my own, something to live for.

The way that I care about Onwabo and the way that I love her makes me think about how my mother feels about me. My mother has clothed me, fed me, raised me and now, at the end of the day, she must also bury me. I was supposed to be the one to look after her. She had put me on her back when I was young, and now that I am an adult, she must again put me on her back. That is not right.

My parents don't live together. They live in different townships, but not far. My father is kind of an old-fashioned person. He doesn't know that I have AIDS. I haven't told him. I feel like I could tell the whole world, but not him. And now I feel like I've been hiding for so long, I just have to tell him because he's my father. I want him to hear it from me.

Here we are at my dad's house, and it is raining a lot. The roof of my father's shack is made of tin. I told him, "OK, Dad, before, in the past, there was no epidemic like AIDS, but now people are suffering from it. How do you and the other old people think about it?" He told me, "It's hard for us old people. You clothe the kid now, tomorrow the kid is dead." I told my father, "I have news. I was trying to tell you, but I just couldn't. But I don't want you to feel as if I am hiding something from you. Three years ago I was discovered HIV positive. I have AIDS. But everything is under control. I'm on ARVs. My health is fine. I'm going to the good doctors. So I don't want you to worry about anything. Just for you to know because it has been kept a secret for a long time."

My mother always said that you must be tough even if you are feeling hurt. You must not always be jelly belly, cry, cry, cry, cry. Telling my dad was one of the hardest things that I have ever done. But I didn't want to cry. He must see just a tough face. I wanted him to see that I was not afraid. That I was going to be OK.
Plans
It's been about a month now since I started on the ARVs. In about two weeks, I could walk and breathe and do things. So when I look back, I just think it was some sort of miracle or something. Let me see outside, what the day looks like. I'll show you around my neighborhood. It is a bright, beautiful day. People are starting to wash their laundry, putting it on the line. Music is coming from every house. I just love it today.

"In the past, our parents were suffering from apartheid. They wanted to be free. And now it is the same with HIV and AIDS. This is the new struggle."

My neighborhood is very crowded. There's this shack behind another shack. Or there's this house, and behind the house is a shack, and behind the shack is another shack. Noxola is one of my friends. She lives nearby. She was diagnosed HIV positive in 1999. She has two daughters. There are a lot of us here in Khayelitsha who are sick, but they don't disclose it because they are scared of discrimination. People do talk, do point, do whisper. Sometimes if they hear if someone is HIV, they burn your house down so you can't stay there anymore. In the past, our parents were suffering from apartheid. They wanted to be free. And now it is the same with HIV and AIDS. This is the new struggle.

Right now I am making a bottle for Onwabo. Now it's almost half past 10, and we are preparing ourselves for sleep. Goodnight. Where is the other blanket? She is already asleep. Melikhaya is already in bed. As always, I'm the last person to sleep.

I'm just imagining what this world would be like without me. I'm not scared of dying, but I'm scared of not being here. Leaving my baby behind. I just want enough time to see her grow a little bigger.

AIDS is not going to bring me down. I am the one who's got hands and feet and a mind. And it is only something that is inside my blood. So it will try to rule maybe inside, but outside I'll be the boss. I want to study further. I want to have a great job. There are a lot of things I want to get done.

I'm just going on with my life.

Source://www.pbs.org/frontlineworld/blog/2006/05/south_african_d.html

Unsung Heroine: Kousalya, Positive Women’s Network, India

2006-09-21T13:34:00.000+07:00

The ACW campaign highlights unsung heroes/heroine’s working on the frontlines of HIV and AIDS. The following piece was written by P.Kousalya, President of Positive Women Network, Chennai, India. September 21, 2006

I am Kousalya from a village in Namakkal district in Tamilnadu, located in the southern part of India. Presently, I am settled in Chennai and I am working on women and children issues through the national network of women living with HIV, Positive women Network (PWN).

I was diagnosed HIV- positive in 1995, and since then, my work has been towards reaching other women and making information accessible on treatment and care, especially rural women, a group whose access to information is limited. Right from the start, PWN emphasis was placed on care and treatment issues, but the government priority was on prevention programmes and it was quite a struggle for us as an organization to resolve this situation.

In 1999, I came down with complications of cryptococcus, tuberculosis, and pneumonia all at the same time and my CD4 count had come down to 24. I was taking treatment in a private hospital and was given antiretroviral treatment (ARV’s). While getting treatment, I was not provided with any information about the treatment and the side effects of the drugs that I was taking. I gained information about the drugs and their side effects by reading the instructions on the drug bottle. Then, I realized how important it was to be educated so that people could learn about their treatment and care, especially if no appropriate counseling is provided through medical facilities. However, this is often not possible for lots of people in India who are unable to read or write. I was also sponsored with a drug that was expensive and was only affordable to me because of a private donor. I was fortunate to support myself because I was educated and could learn about treatment and care and had a private donor that made drugs affordable to me.

But, I asked myself the questions: what about women who do not have anybody to help or cannot read. Another question that troubled me was: how many [women] can have this privilege of having a private donor or “sponsor”?

In 2002-2003, I had an emotional breakdown because of death of my close friends in the network movement and people whom I had met during my visits to the hospitals. Besides being in grief for my friends, I was also enraged at the Indian government. As women were dying and children were becoming orphans, the government was still focusing on HIV prevention and giving less attention to care and treatment for people living with HIV.

PWN made concerted efforts with the state and national government and even raised issues at the international events, including the international conference at Barcelona in 2002 when the health minister from India was also present. At the conference, the health minister made a promise that ARV treatment would be made available free of cost to people living with HIV. Since 2004, the government has been providing ARV to people living with HIV with prioritization for women and children.

I was also awarded with a fellowship programme to conduct study to advocate issues of women living with HIV through health innovation fellowship programme of the Population Council. This programme enabled me to study the problems of women in relation to treatment and care and also provided with information that I use at many committee meetings that I represent.

I personally feel that through hard efforts we have achieved what was talked about as impossible: “free ARV treatment for all” .So we people living with HIV should not cease in voicing our concerns and with support and partnerships, we can achieve quality care and support for people living with HIV including the often least reached women living with HIV and children.

Our efforts will not ease, as the government is also taking up a lead in enabling women with the treatment and care, our efforts now have moved towards advocating for better reach and quality services, especially for pediatric formulations of ARV’s, second line ARV regimens in the government programme.

Unsung Heroine- Dr Lydia Mungherera

2006-09-18T16:38:00.000+07:00

by AIDS-Care-Watch campaign

According to the latest statistics, in 2005 alone, 3.1 million people lost their lives because of HIV/AIDS-related causes. This sky rocketing statistic each year is evidence that not enough is done in response to the growing AIDS pandemic.

In the midst of this health crisis, and its associated economic, social and political impacts, there are people like, Dr. Lydia Mungherera of Uganda, who have become an inspiration for people living/working with HIV/AIDS.

Lydia’s true motivation came after she discovered her HIV positive status in 1997. At first, she felt helpless, but her inner strength mobilized her to live and strive to help others also affected by HIV/AIDS. According to Lydia,

“After recovery, the fact that God kept me alive when I was on my death bed in 1997 when I was brought back from South Africa to come home to die with a CD4 count of 1 has made me realize that I have a calling in life. I searched my mind for this calling and have discovered that it was to help fellow people living with HIV/AIDS live. Each day that I help anyone else in my position, I get more encouraged to work. Many people are living with stigma and denial especially the elite.

We have no medical Doctor in our country who has revealed their status except me. Seeing my fellow doctors dying in denial keeps me going to try to persuade them to at least go for testing. Being a woman who was saved from death when I have two children gives me the strength to help my fellow women especially in Africa where women bear the brunt of the infection. Having friends like you and many other activists has given me strength to go on. My two lovely children who my late husbands left me with are a great part of my strength thank God that they are both not infected with the virus.”

Lydia has been at the forefront in taking the fight against HIV/AIDS. Since 1998, Lydia has worked in the field of HIV/AIDS doing community work and building the capacity of people living with HIV/AIDS through skills building and increasing their knowledge about HIV/AIDS related issues. She has also been involved in HIV/AIDS advocacy and policy at the local, national and international level.

Some of Lydia’s accomplishments include cofounding “Uganda Cares”, a treatment center at Masaka clinic, which offers free antiretroviral drugs to people livening with HIV. Lydia also started “Mamas Club” in 2003, which is a psychosocial support group for positive mothers. To date, Mama’s club has enrolled 50 mothers with the main aim of skill building, and mentoring couples, and income generation.

In addition, in 2006, she was appointed by World Health Organisation (WHO) to join the 3 by 5 steering committee, and she has attended several WHO meetings as an expert in relation to confidentiality and security of HIV information, counseling and testing, prevention, and treat train and retain (TTR) health workers.

Lydia Mungherera is one of the many unsung heroes, who are leading the fight against HIV/AIDS. They are the true heroes of our times.

ACW dedicates this quote to all the unsung heroes in the fight against HIV/AIDS:

“The world is moved not only by the mighty shoves of the heroes, but also by the aggregate of the tiny pushes of each honest worker”.

ACW is thankful to Dr Lydia Mungherera, for sharing her story and giving us inspiration and courage in order to overcome challenges that we encounter in the fight against HIV/AIDS.

The personal cost of treatment: Rose’s story

2006-09-18T16:33:00.000+07:00

Rose lives in Amuka- Kitale in Trans- Nzoia district (Kenya), with 27 members of her extended family. In 1997, after many months of illness, her husband died of AIDS.

Rose nursed her husband while he was sick, but she did not realize that he had AIDS because he denied it. When her young son Joseph got sick with tuberculosis, Rose and her son were tested for HIV and discovered they were both infected. In 2002, Rose became very sick, and her family persuaded the doctors to put her on antiretroviral treatment (ARV); they had already lost four family members to AIDS.

But paying for the ARV drugs is a struggle. Rose gets some financial through a ‘well wishes lady’ who heard of Rose through a local NGO- she sends donations whenever she can. But Rose lives everyday with chronic uncertainty about whether she can afford to by her treatment- the bills just keep coming.

One of her recent pharmaceutical receipt’s is for 15,200 Kenya shillings (US$190). In addition to the drugs, she has to pay 200 shillings (US$2.5) for each consultation, and 400 shillings (US$5) for a CD4 count test. Traveling to and from the clinic costs her 120 shillings (US$1.50). Joseph (her son) is not yet on ARV treatment, but requires treatment for opportunistic infections from time to time, and this too costs money.

The large family currently survives on the wages of Rose’s brother, who is a watchman, and her sister, who is a housemaid. Two other married sisters living elsewhere also contribute.

Access to ARV treatment means nothing if people can’t pay for the drugs. Helping people pay for these life-saving medications is imperative, and this is precisely the role institutions such as the World Health Organization and the Global Fund for AIDS, Tuberculosis and Malaria have committed themselves to. Let’s hope they step up their efforts to help people like Rose pay for their treatment and stay alive…before it is too late.

Submitted by ACW campaign partner:
Johnstone Sikulu Wanjala
Programme coordinator
Sima community based organization
Po box 1691,
Kitale30200,
Kenya
+254-733 453 339.

Stories from the frontline: Northern India

2006-09-18T15:36:00.000+07:00

Simrat was the youngest child in the family. His parents recall that he was not very keen about going to school but very good at learning technical jobs. Early in his teens he started working as a mechanic at a nearby bicycle repair stall. By the time his parents realized, Simrat was already addicted to drugs. He started to lose weight and one day he developed a big abscess on his backside. He was admitted to the local government hospital, where he tested positive for HIV. The doctors refused to drain the abscess and he was forced out of the hospital. His parents tried to persuade doctors in one or two private nursing homes to admit him for treatment but no one agreed. His elder brothers and sisters-in-law also refused to let him enter the family home. He was forced to stay in a distant room in the family farmhouse, where his aging parents provided him food and care. Simrat died a few weeks later.

Vartika teaches science in a reputed college in Kapurthala district, Punjab. When her husband died of AIDS two years ago, she and her nine-year-old son had already been tested positive for HIV. A widower businessman with grown up children agreed to marry Vartika on the condition that she left her HIV positive son with her parents. As a stressed out mother she had no option but to abandon her only son. When asked why he accepted Vartika but refused to take in her son, her husband curtly replied, “I needed a woman to keep my household going, why bother about a boy who is going to die sooner or later anyway”.

Simrat and Vartika are just two of the many people living with HIV/AIDS in Punjab, one of the most affluent states of the country. The state is described as ‘food bowl of India’ and has the highest per capita income in the country, next to Goa. The state is currently grappling with a declining male-female ratio due to prevalence female foeticide, made possible by blatant misuse of ultrasound scan machines. This mindset is also reflected in the way the community in this state treats women infected with HIV.

Dr. Rakesh Bharti of the Bharti Derma Care and Research Centre at Amritsar counsels three hundred families, which look after HIV positive relatives. According to Dr. Bharti in-laws cast out 99% of the widows of people who have died of AIDS, and even their own parents are not willing to accept them. To add insult to injury the in-laws refuse to part with the male children, irrespective of their HIV status.

He recalls the dilemma of a mother whose eldest son died of AIDS. The family had kept it a secret, even from her un-educated daughter-in-law. The parents of the widow wanted the old woman to marry her younger son to their widowed daughter (whose HIV status was unknown) according to the tradition in the community, but for obvious reasons she would not accept. The fate of the young widow is not known.

Dr. Bharti has noticed a clear-cut pattern, which families follow when their members are chosen to receive ARV treatment. Top priority is given to adult males who are the bread winners of the family, followed by male children, then comes the turn of the mother and last of all it is the female children who have access to antiretroviral treatment (ARVs).

Families have to pay a very heavy price for arranging ARV treatment, and usually the cost is not just monetary.

Varinder works for a national insurance company as a clerk and is currently receiving ARV treatment. When asked how he was meeting the cost of drugs from his limited income he explained, “First I gave up smoking, then the family stopped going for outings on weekends”. After a pause with tears held back he said, “Then we stopped celebrating birthdays in the family”.

Another HIV positive professional couple from the sleepy town of Ajnala, twenty-four kilometers from Amritsar has to shell out Rs. 2400 (US $ 54) every month towards the cost of anti-retroviral drugs (ARV). Their only daughter, wanted to study medicine but the cost of drugs leaves them with no spare money to pay for her tuition. Instead she has opted to study humanities.

Lakhbir tested HIV positive in October last year and was taking ARVs until June this year. Then he suddenly disappeared. In September his wife contacted the doctor to see if she could return some of the drugs, which were lying unused. “What happened to Lakhbir?” the doctor enquired. “He committed suicide”, she replied. The debt incurred in paying for the cost of the drugs was mounting every day and it cost him his life.

Dr. Bharti is also worried about the readily availability of HIV testing in the State, among untrained staff. Often, people working in clinical laboratories in rural areas people don’t possess the necessary skills to appropriately communicate the results of tests to individuals or their families. Dr. Bharti knows of at least one person who committed suicide soon after the laboratory technician announced the result of his test to him. The Zonal Voluntary Counseling and Testing Centre at Amritsar also lacks skilled staff and often hands over the results in unsealed envelopes.

Yet another source of concern is the insensitive attitude of doctors towards people living with HIV. Obstetricians refuse to conduct deliveries for mothers living with HIV and the surgeons refuse to operate. Patients have to run from pillar to post to seek medical care.

In an otherwise prosperous state, 6% of people live below poverty line. There are large numbers of people living with HIV who cannot afford ARVs when they need them. Public hospitals have little to offer beyond HIV testing. It is not known when and how the ARV drugs will reach these poverty stricken patients. How we keep them alive until then is a big question.

HDN Key Correspondent

Email: correspondents@hdnet.org(December 2004)

Personal story of one of us

2006-09-18T15:24:00.000+07:00

from a friend of the ACW campaign, August 2006

I laid in bed for what seemed an eternity, and then a chubby looking man in a white coat walked up to me and said. "Mr. … we have just received your results, they have come back positive."

Everything went black. I did not collapse or faint. But, I just could not believe the drastic turn of events. It seemed that my world had come to an abrupt stop. This is what happened to me on 13th of June 2006. I was taken ill to the local general hospital with a severe stomach disorder. Unable to diagnose my illness, doctors wanted me to have an HIV test. I consented to the test. It was not something I was scared of as I had done the tests before, and they were negative. I was confident of my status but wanted to get to the bottom of my painful stomach cramps. I had been in the hospital for over a week before this fateful day.

All kinds of tests were done to find out what was wrong with me. It is difficult for me to describe what I felt at that moment because for a long time I was in a state of shock. Disbelief and sheer confusion reigned in my mind. After the doctors left, I laid numb. Life had dealt me a card unknown to me, at least most unexpected. I did not sleep that night nor did I find it easy to sleep the subsequent nights. The world all of sudden became a very lonely place. I was going to die young. At 33 pursuing my master’s degree, I believed that nothing was impossible. Life for me before the HIV test held out limitless opportunity yet all that vanished in an instant.

As days dragged on and one series of events led to another, I noticed with much sadness the reaction of some of my close friends. With the disclosure of my status, I received less hugs and less kisses until they were none at all. I understood why HIV positive is a frightening thing to many. What my counselor later said made sense, that people fear what they do not know.

Unfortunately, this made it all the more difficult for me. I still had friends who gave me encouragement. Who stood by me through thick and thin, and they are still my friends to date. All it took for me to see things differently was a simple phrase "life is about keeping on moving, never mind the direction just keep on moving".

I know this is very simplistic but I felt so moved by this simple statement that I have written it on my notice board in my study room to remind me of the journey that I am on. I was discharged from the hospital on 20 June. I was still weak from all the drugs they had pumped into me. I took each day as a step in my journey of life, keeping in mind that each day could be my last, HIV positive or not.

I started living for the moment. Each moment I drew breath, I cherished. I started on a regime of simple exercises in my room. The more I exercised the more alive I felt. I finally was bold enough to sign up for exercise at the gym. My appetite returned and food had taste again. I have since gained strength. I obviously have a long way to go but I am not going out without a fight.

Living is a choice we make each day we wake up in the morning, and for me survival is not something that’s given, it is a challenge and I face it every day. I now seldom think of death, instead I think about life. How will I live tomorrow? What job can I apply for? In addition, what do I want to achieve? I set for myself simple realistic goals and I do not push my body beyond its limit. I am still waiting to hear from my doctors if I will need medication soon but I must say I am being positive about life, and I know it will get better.

Anonymous, Zambia/UK