"Living With AIDS"- Thembi Ngubane

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

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

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

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

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

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