By Sarah Warmus
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.