The Body Covers: The XVI International AIDS Conference
XVI International AIDS Conference: An Interview With Henry Luyombya
August 18, 2006
A 26-year-old Ugandan, Henry Luyombya was shocked when his HIV test came back positive, He hadn't been worried; in fact, he had only been tested to set an example for some friends, who he was encouraging to seek counseling and HIV testing. He had only had unprotected sex one time. In this interview with The Body, Henry shares the story of his struggle with his HIV diagnosis and discusses how it drove him to advocate for greater youth involvement in HIV prevention and policy.
When did you find out that you were HIV positive?
I found out in 2002 after I had gone to a clinic to just know what was in my blood. Because I was encouraging a couple of my peers to seek voluntary counseling and testing, I just took it upon myself as an experiment. I didn't expect it to be positive.
It was a difficult situation. I remember -- I almost broke down. I cried inside me. I didn't tell anyone for many weeks. I had some little information on HIV, and then I decided to use my story to reach out to my fellow peers, to address issues of prevention and also to advocate for treatment and care for HIV.
How have your feelings about HIV changed over time?
Being a young person living with HIV, the stigma that prevails and the discrimination related to HIV, has been a big problem, but I have tried to fight that through seeking more information on HIV and also counseling. Counseling has helped me live with the diagnosis. I accepted the way it is, and I tried to join support groups that are for people living with HIV. That has really helped me [to keep] going. Also, talking about it. You know, joining support groups, doing presentations at international conferences and meetings, all have been key in helping me live with the problems, although stigma and discrimination is a big, big issue and needs to be fought in the community.
When you've told people you are HIV positive what's been the best response and what's been the worst response?
Living with HIV as a young person carries a lot of stigma. It is kind of different if an adult tested positive. One challenge I can mention here is the stigma I faced from a colleague, a good friend whom I turned to for care and support and instead ended up telling all my peers [about my diagnosis]. They ended up leaving me alone. But still the courage I have got, when I talk about the problem I help create the change. This helped me link up with MTV, and they did a documentary with Nelson Mandela. When I interviewed Nelson Mandela -- that was about three years ago -- the main issue was remaining strong, you shouldn't give up, the need to work as a team, fighting stigma and discrimination and also acknowledging that HIV is like any other illness. We can fight it. We can meet with it. What is important is giving people information and education and then avoiding stigma.
How do you think we should be fighting stigma and discrimination?
It's a big, big problem and it kills people faster than even the infection itself, because it prevents people from seeking information and also it keeps people from coming out and exposing their status. Very importantly, we must address the need to seek correct and useful information about HIV. Some young people don't have correct information. They still have misconceptions about prevention.
What kinds of misconceptions have you come across in your work?
If I can talk about the misconceptions, here in Canada, I have done some HIV/AIDS education in high schools, and some young people still believe you can get HIV in a swimming pool. Or they still believe AIDS has a cure. [Or that] you can get HIV through a mosquito bite.
Then, in Sub-Saharan Africa the myth mainly is that you can get cured of HIV if you sleep with a virgin. In South Africa over the last couple of years we have had [an] increasing number of cases of children being raped. This happens partly because some people believe if you sleep with a virgin child, or a virgin girl, you can be cured of HIV.
What conditions in your life put you at risk for being infected with HIV?
That's a good question. I was infected through unprotected sex, heterosexual. I remember we went drinking one weekend with my colleagues, and we drank ourselves silly and that's when I had unprotected sex for the first time. I always had sex which was protected [before that] and this [incident] could have predisposed me to HIV.
However, that question might not make sense because I believe how one got the HIV may not matter right now. The problem is how to deal with the problem. The issue is we need to deal with me living with HIV. The second issue is treatment and trying to support adults to prevent new infections and also to care for those living with HIV.
What is your treatment regimen?
I'm not yet on treatment. My immunity is high enough. My last CD4 count was 352. I take vitamins and Septra. Then also I try to maintain a good, balanced diet and nutrition. It keeps me going, so I'm not yet on any drugs, although I'm sure the time is going to come when I'm going to need these drugs and antiretroviral therapy medications are not easily accessible. I'm still thinking what am I to do in case I need them and I can't afford them.
What do you do to keep yourself healthy? Do you exercise? Do you just make sure you get enough sleep?
I do lots of exercises. I count on friends. I go for stress management retreats that help me forget about the problem.
To me, HIV is not a big issue. My biggest worry is those young people that are still getting infected. I see it as my role to help prevent new infections and then also to advocate for better funding to increase support and care and treatment for those who need them, most especially in developing countries and particularly in sub-Saharan Africa.
What organizations are you involved in the fight against HIV and what are their goals?
In Uganda, I was involved with The AIDS Support Organization [TASO] through a youth project, known as the AIDS Challenge Youth Club. In Canada, and specifically for this conference, I have been part of the organizing team, where I have represented youth voices on the Leadership Programs Committee.
I am a part time research assistant with the Committee for Accessible AIDS Treatment, which is part of the Ethnoracial Treatment Support Network. This is a group of about 20 agencies working to improve the health conditions of refugees and immigrants, not just people living with HIV, in the greater Toronto area. I've been involved with Amerif-Canada, AIDS Committee of Toronto through volunteering and also the African Partnership Against AIDS and the Canada-Africa Partnership Against AIDS and many other agencies on a volunteer basis.
What would you suggest to someone who is newly positive and wants to be an activist?
Firstly, HIV disclosure is not easy. [The first thing to do is to] seek a lot of information on HIV and then understand the realities of it and then get more involved in the community. The community support networks are really key in helping turn the epidemic around. Then, also using other various social structures, like a church, or any faith-based initiatives [can] be a very important source in helping young people coping with the problem.
What are your fears and hopes for the future?
I hope to be a father, and I'm still looking for a girl. When I get married -- it's kind of silly, but I want to make a family. I want to hook up with someone who is positive and get on with the family, but also be more involved with HIV prevention and awareness and education.
My fear is if we don't change right now and if we don't involve young people -- also young people living with HIV -- 25 years from now we might still be coming back to Toronto, and that's a big problem. I wish 25 years from now [that] we [won't] be seeing HIV any more and such international conferences [won't need to happen]. But still, people [should] say there [can be a] world without HIV and just begin encouraging people who contribute to that. Mostly, I'm sure, it's going to be the young people.
You mentioned that you want to find an HIV-positive partner. Would you ever consider dating someone who is HIV negative?
Yes, I would, but I would reveal to them my HIV status, although it might not be a good relationship. I have friends who are negative and some people think we are moving on with them. But they know my status and we just have fun, drink, watch movies. I wouldn't mind having a negative partner, although I would prefer someone who is positive. We could share stories and similarities.
Within those relationships, with your family and friends, how have they changed since you were diagnosed? How do you decide whether to disclose your HIV status to them?
Disclosure is not an easy issue. It needs considering who to disclose to, and then, when. Timing is very important. Part of my family has been supportive and they know what I am doing. Some of them are involved with HIV/AIDS education in their communities, at the grassroots [level].
That's amazing. Any final words of advice for newly positive youth or youth who want to get involved in the HIV movement?
My key message would be: It [was] time to deliver yesterday. It's not now. We need to deliver treatment and prevention -- not now, but we need[ed] those drugs yesterday. We need prevention, we need microbicides, lots of research in vaccines. [It all] should be done as soon as yesterday. Otherwise, new infections are still [happening], even up to now.
We have all the treatments, we have all the knowledge, so the problem is with working with the people involved and involving each and everyone -- working with sex workers, drug users, men who have sex with men, young people, women, children, everyone should be part of the struggle, including our political leaders. But most [of all, we have to include] the young people. If we involve each and every one in this struggle, we seek voluntary and confidential testing, we seek all the education, and we transform the knowledge that we have over the 25 years into meaningful action, then in the next 25 years we will not have to meet in places like Toronto to discuss HIV.
Click here to e-mail Henry Luyombya.
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