To live with HIV

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

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

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

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.



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