THIS INTERVIEW TOOK PLACE at the XVI International AIDS Conference in the summer of 2006. Nina was attending as part of Hope's Voice, a new group of HIV-positive people under 30 whose goal is to educate youth about HIV.
Nina, let's start with you telling us a little bit about yourself.
I'm 23. I currently live in Atlanta, Georgia. I am a second-year public health student in epidemiology at Emory University, Rollins School of Public Health. I've also been HIV positive for 23 years, and I contracted it through a blood transfusion.
Could you tell us a little bit about your family?
My family currently lives in Albuquerque, New Mexico. My father was active duty Navy when I was born, so I have lived in about 12 U.S. cities, through both moving with my family and also going to college and going to graduate school.
Have you found HIV health care different in any of those cities?
For most of my elementary school, middle school [and] high school [years], I had military health care. When I went to college, I also had military health care, and it's different from the civilian sector in that infectious disease is not primary care. So they send an HIV-positive patient to an internist or a family medicine doctor, someone who may not be aware of the particular needs of a person living with HIV and AIDS.
What effect has that had on your life?
I think that, in my particular situation, when I had my blood transfusion I was a six-week-old infant, this was before testing came out in 1983. The military has a process for blood look back, so that if your donor tests positive for a disease, not just HIV, the customary procedure is to trace that blood, to find the recipients and let them know that they might be exposed. In 1989 the military found out my donor [had been] exposed. However, I wasn't diagnosed until 1991, through an accidental pre-operative test. I don't know if that experience would have been any different had I not been in a military family, but I do think that because I moved around a lot, it may have been harder to track me down and let me know.
You said that you were diagnosed with HIV more than 10 years ago -- How many drug regimens have you been on? Have you ever had a problem adhering to your meds?
When I was first diagnosed at eight years old, I was put on AZT [zidovudine, Retrovir] monotherapy four times a day plus Bactrim [trimethoprim/sulfamethoxazole, Septra] three times a week for PCP [pneumocystis carinii pneumonia] prophylaxis. The AZT meant 3 a.m. medication times for about three years. When I moved from New Jersey, where I was diagnosed, I changed providers as well as medication: I switched from AZT monotherapy in 1994 or 1995 to ddI (didanosine, Videx) monotherapy and continued with the Bactrim. It wasn't until 2002 that I was finally put on HAART (highly active antiretroviral therapy) with twice-daily, single tablet Trizivir [AZT/3TC/abacavir]. Then, I stopped PCP prophylaxis in August 2005. [All of] my regimen changes have been driven by changing standards in HIV care, rather than side effects or resistance.
I have had issues obtaining complete medical records from the military treatment facilities I went to. So, I don't know what my counts were like as I was growing up. My understanding of why I was kept on monotherapy for so long [after 1996, when HAART began to be widely used] was that I was a pediatric case. Plus, I had med adherence issues in my teens. And, in general, with most children at that time, it was easier to keep them on monotherapy for simplicity's sake rather than begin HAART. Of course, this was as long as there were no overriding complications -- and I didn't have any. When I went to college and got a new doctor, I was in a place where I was on my own and truly had to begin to take living with HIV seriously. My CD4 count was hovering around 200 at the time, and we decided to initiate HAART because monotherapy had become obsolete.
I'm not going to pretend that medication adherence is easy -- even now. As much as HIV-negative people have denial about the existence of HIV/AIDS, the HIV-positive ones also have some amount of denial -- even old vets like me. That is normal. I don't think there is a single one [HIVer] who would turn down the opportunity to be negative. I say this because of how many people say that HIV has made them a better person, etc. I'm pretty sad, considering I only take one Trizivir pill, twice a day ... but you swallow more than a pill when you take meds -- you swallow life. And that's no easy pill to swallow! I'm not perfectly adherent -- my mom caught me flushing my meds down the toilet in my teens -- but I know better, and I will do better.
In Atlanta, my school of public health has been instrumental in helping me get the best HIV care. Having left the military care system and knowing that Emory had such a well-established reputation for HIV research -- this is why I went to be a graduate student there. They knew who I should go to, and I'm very happy with my physician and my clinic. However, I'm also an advocate for myself. The effects of care are minimal, unless you are an activist patient.
What are you doing at the conference? What's your work in HIV?
I'm here mainly as a person living with HIV. Again, because of the military lifestyle, you move from place to place and it's hard to make friends. I didn't meet anyone who had HIV until I was 17. I had it since I was six weeks old. I was diagnosed when I was eight and a half [years old]. But even at eight and a half I was asymptomatic. I never met anybody with HIV until I was 17 and at a different high school conference. Then the next group of people with HIV I met were the people with Hope's Voice. I'm a speaker with Hope's Voice now. It's a young bureau of twenty-somethings living with HIV. When they came to my college campus it was just something that increased my net of HIV contacts by 500 percent because I had been so isolated for so long.
Being that isolated, were you extremely open about your status or did you prefer to keep it to yourself?
I think part of it was that when I was diagnosed, it was 1991, the same year as Magic Johnson's announcement and my parent's found out about my diagnosis before I did. The doctor was the one to tell me I had HIV. He said to me, "You have the human immunodeficiency virus. Do you know what that is?" Now, I don't know what eight-year-old knows what HIV is, but I knew the month prior I had heard the Magic Johnson announcement, and I thought, "This is great," because I was related to Magic Johnson in some way. So I started to tell that to my elementary school classmates. They would say, "That's so cool. How?" And I would tell them I have HIV. They don't know what HIV is either, but they go and tell their parents, "This girl in my school is related to Magic Johnson!" [Laughing.] The parents would ask, "How?" And the parents would be really worried. But because I associated it with Magic Johnson and because I was a kid -- How do you ask your child to keep a secret? My parents never did that. So I've been open about it since I was a young child.
I think it's much different to be diagnosed at such a young age, versus now. I can't imagine being a young adult and being hit with that diagnosis with all that I know now and all the years of stigma that have been built up. I think the more people that speak up about it, and normalize it -- I think it will be good for the epidemic. That's why I'm here.
Could you explain a little more about your worst experience with that stigma or discrimination?
The only one I can point out is when I was younger, after I was diagnosed, I needed to go in and tell the school nurse, I guess about medications, just so the school district would know. I knew, because I was open with my schoolmates and I would tell them the Magic Johnson story, there were some parents who were worried. There was a PTA [Parent Teacher Association] meeting involved where there were some parents who just weren't comfortable having me at school with their children. At the time of my diagnosis, the principal of my school was on sabbatical. He was under the impression that children with HIV shouldn't be in the public school system. Now, I don't know why, but he kind of had the acting principal keep an eye on me, to make sure I wasn't a threat.
But that's the only story that I know of where I have been discriminated against. I guess because I come across so naturally and so normally now people don't say anything after I tell the story. I guess I'm so comfortable with it, so it makes it easier for other people to be comfortable with it.
What advice would you give for someone who was newly tested positive?
I would tell them to find someone that they can turn to. That's probably the hardest part. It's them and their fears, blocking themselves and isolating themselves. They needed to find someone to talk to because to hold that inside for so long, and to keep that a secret is so detrimental to your mental health. I'm under the conviction that mental health severely impacts physical health. I don't know how to speak from that perspective, because I was diagnosed at a young age, but I knew that because when I turned 17 I harbored those feelings of shame and [asked myself,] "Why won't anyone talk about this with me?"
When I went and met someone who had HIV. It was just such a relief -- or at least someone who was willing to talk about it -- because my family was not as willing to talk about it. I didn't look sick, and that's what everyone expects to see. They expect to see you look sick before they want to talk about it with you.
So who was really the first person you really spoke to about your HIV?
I think the first time I spoke to a group I was at a high school conference for high schoolers who wanted to be doctors and someone said, "Blood transfusion cases are so rare we just don't have to worry about them anymore." This was on a day that had focused on HIV and AIDS and a speaker was coming in. I turned to her and said, "I really wish I didn't have to worry about blood transfusion cases, but 17 years ago that happened to me." Those people really were interested in my story. She blushed bright, bright red.
I just talk about [HIV] with anyone who's willing to listen. Usually if I'm living with people that's one of the first things I talk about, and if people ask me what I do I also talk about HIV as well, because it's kind of like my hair color. It's just a part of me. It's not all of me, but it is a part of me. I just don't see why I should hide it.
Is HIV the reason you decided you wanted to become a doctor? Or was that something you had thought about before you were diagnosed?
I'm no longer on the doctor route. I'm more into public health, prevention. I had wanted to become a doctor because of the HIV, sure. I had wanted to do research and pharmaceuticals, but I'm much more of a mathematics person. I'm combining my love of mathematics and my love of political science and government in epidemiology, which is the study of disease and populations. Here at the AIDS Conference all of these epidemiological studies are being presented, and this is how we know what we know in medicine -- because we study groups of people. I don't know if eventually I want to go into HIV research in medicine, because I certainly can pick something else.
Have you seen an epidemiological study presented at the conference that you think is really going to affect the future of HIV?
I saw a presentation on harm reduction and HIV, and it talks about the clean needle exchange. This is in countries other than the U.S., where I live, and it's always interesting to see the evidence for harm reduction, yet live in a country where harm reduction is not even spoken about. They make it so clear and evidence based, it's opened my eyes.
This conference has opened my eyes to the international epidemic. I knew mostly about HIV domestically, in the U.S. I'm taking it all in and I hope it will make me a better public health professional for it.
For those listeners in the U.S., could you describe harm reduction, since it really isn't spoken about much?
I think harm reduction is a comprehensive approach to make smarter choices towards drug use, or they had the large sex workers exhibit here. I think it's better to use examples. So, harm reduction in terms of drug use would be clean needle exchange, substitute drug programs, more drug counseling, more drug rehabilitation, as opposed to the U.S. [policy] where any amount of drug you use you're penalized for it, and it's either all or nothing. They're asking you to abstain from drugs just like they ask you to abstain from sex. Using condoms is another example of harm reduction. There's something else. Yesterday they said, "Eighty percent of something is better than 100 percent of nothing." And the U.S. has never acknowledged free needle exchange programs. That's the biggest one here, the harm reduction.
Other than that, what other myths or misinformation do you think is prevalent in the United States?
Certainly, the abstinence one. Abstinence works for a short amount time. The war on sex is the same thing as the war on drugs in the United States, where abstinence is mostly talked about in schools. I think the biggest myth is that condom dispersion in schools promotes promiscuity. I'm not really sure how a piece of rubber can tell someone, "Go have more sex." I don't know anyone who is saying, "I have a condom. Let's go have more sex." The fact that HIV and AIDS is a moral issue instead of a health issue, I think that's kind of backwards. That's a lot of what perpetuates this epidemic.
So would you like to see change?
After 25 years? I'm not sure what we're doing wrong. I hope we get on the right track -- that we stop talking about the things we want to do and just go do them. I'd like to see more youths involved with this epidemic, especially since a lot of the older generation involved with this issue, the scientists, they're the last generation to have grown up without HIV and AIDS.
I've grown up, all my life, HIV and AIDS has been around, and I think the next generation is really essential. We need to internalize the reality that HIV can happen to me. We haven't really done that with the youth. I know when I go to talk colleges and universities, they're under the impression that HIV/AIDS can't happen to them because they are more educated, as if the college bubble provides them with immunity against HIV and AIDS. I like to go there, and say, "Hey, I was an undergraduate at a prestigious university. I have my diploma. HIV can happen to you. You wouldn't even know it by looking twice at me, because it doesn't look like anything."
You mentioned that you were a student. What are you doing now?
I'm a second-year epidemiology student at Emory University.
Is your status disclosed at Emory?
It is. I had participated with Hope's Voice, in their 2006 Road to Hope Tour, and Emory was one of the stops on the tour. So after I had done that presentation, the next two days I was on the front page of the school paper.
Since the presentation has your life changed at the campus?
I think it's a little different because it was mostly undergraduates and some Emory graduate researchers. The graduates don't know really who I am, but the undergraduates [do]. I've had some people come up to and say, "Hey, you were at that presentation and I think it's really great because you are not that much older than me, and yet you're still doing what you're doing".
Have you had a chance to be a mentor for those students? What kind of questions do they ask you?
I get a lot of questions about my relationship and my sex life. They love to ask about that sort of thing. I answer it as honestly as I can, because I'm kind of out there like that. I'm not ashamed of anything I do, or don't do. But I tell them: I can still have a relationship. I can still fall in love. I can still be just like you.
Are you currently in a relationship with anyone?
My school work. [Laughing.] No, my life is very hectic right now, and I think once I get settled someone will come along. But for now I'm just doing what makes me happy and if someone's along for the ride, that's great.
Once you get into a relationship, when do you decide to disclose to that person? Is it right away or later?
I disclose pretty much right away because I think it's harder if you get attached to somebody and you later on disclose. There's two things that could go wrong there. One, they might actually have some prejudice against HIV, or two, they might not have a prejudice against it, but it feels dishonest that you kept that from them, and you will never know which one of that two it is, when they decide to up and leave. So I just go ahead tell and if someone has a problem with it right out front I applaud that, because it's the covert prejudice I can't do anything about. But if you tell me right away that that's going to be an issue, I appreciate that. You're being honest and it allows me to not get hurt in the process.
In relationships, which has happened more often?
Neither one, the men in my life were my friends. My friends know pretty much right off the bat about my status and I don't think HIV played a major role [in those relationships], but in the end they couldn't really understand what I was going through. And that would be something that came between he and I.
Do you think it would be easier to have an HIV-positive person for a partner?
It would be easier, I think. But my twin sister, she said, "People aren't magnets. There are no positives and negatives, It's whoever you happen to fall in love with."
What advice do you have for the youth at the conference?
I can't really say anything regarding the youth since I haven't really been going to those sessions. I've mostly been going to the scientific sessions, but I think that would be a great, great thing to tell them, to go to the more scientific sessions, because it seems like we have the youth conference and the everybody-else conference. And really this is supposed to be the most comprehensive conference. So if they could go to the science sessions, that would be really great.
You think that would make their issues heard?
I think with all the youth talking about evidenced-based prevention, if they could get some of the hard facts and figures from these scientists working on these studies and go to press with them, I think that would be great.
What's been the highlight of this conference for you?
Meeting people from other countries because I've been in the United States for so long. Being in Canada [is great because] this is my first time out of the States. It's not very far, but being able to meet people from Kenya and Suriname and South Africa and the United Kingdom, I've just never had that kind of exposure before.
What has it been like for you to meet people for the first time from so many different countries?
I think everyone I've come in contact with at the conference has just been inspiring to me. Here at AIDS 2006, you have everyone gathered together working toward a common goal: the end of AIDS. Anyone who works with us on that ought to be commended -- I know that there are many more individuals who could not attend AIDS 2006 [that fall into that category]. And the people I've talked with have come to me in a variety of ways: Some I've met in the PWA [people with AIDS] lounges, others by just sitting next to them in a session. One person in particular I met through that vast network known as MySpace [a social networking Web site]. I've met still more in helping my organization, Hope's Voice, build new international partnerships and increase the awareness of our campaign "Does HIV Look Like Me?".
The PWA lounge has been a welcome retreat from the massive human trafficking that is the conference. I have problems with fatigue, so it's really nice to have somewhere to go to take a nap. I also am enjoying the free snacks they have there. Having paid my own way to the conference was no small expense, so every little bit has helped. I think they had other services in the lounges, but I haven't partaken. I've only taken what I needed, and nothing more.
The conference is just so so big -- I am unsure of what to take from it [and all the amazing people I've met]. I think the largest component is that it has reduced my skepticism. I didn't think that people cared about AIDS anymore. Watching these 30,000 people has changed my mind. I'm excited to see where I go in the next two years before Mexico City in 2008.
Do you think you are going to want to travel more after this conference?
Certainly, certainly I want to find out what it's like on the other side of the world now.
Anywhere in particular you are thinking about going?
Madagascar. [Laughing] It's a nice tropical climate, and I'm a particular fan of lemurs.
All right, anything you want to add, any last thoughts?
I just wish everyone was here. I just wish all the listeners could be here, but, hopefully, I did a great job of relaying the excitement that is being here. It is quite a zoo.
Thanks so much.
Nina Martinez can be reached via e-mail at email@example.com.