Public health analyst Nina Martinez is 35 years old and has been living with HIV for all but six weeks of her life. Her father was active duty Navy, and she’s a twin. She has HIV while her twin does not. This is her story:
How it happened: My twin and I were born 12 weeks early and at that time in the mid-1980s you needed to take a lot of lab work. Because they took labs so often, we were both anemic. We required blood transfusions at 6 weeks old. I was transported to San Francisco and she remained at San Jose, so we got transfusions in two different cities. I ended up with HIV and she did not.
Diagnosis: I didn’t know I was HIV positive until I was 8, in 1991. I got chicken pox like everyone else. It was just an accident that I was tested and a complete surprise. It turned out the Department of Defense knew for a year and a half that the donor from 1983 had tested positive. They had sent a letter to Hawaii, but my family was living in New Jersey then and didn’t get it. After I was diagnosed, I started taking AZT (azidothymidine).
Photo credit: Johnnie Ray Kornegay III
Magic Johnson and me: When Magic Johnson made his announcement, I was diagnosed about a month later. That’s the only association I had with it. I honestly believed that Magic Johnson and I were related. I needed someone to look up to. I would go around and tell my classmates that Magic and I were related, and they were very confused.
School days: At 8, you don’t know what HIV is, you just know what you hear on TV. My classmates would tell their parents that somebody at their school was living with HIV. Parents at that time just didn’t want me to go to school with their kids. But thankfully it was against state law to discriminate against children living with HIV.
Teenage rebellion: I used to flush bottles of medication down the toilet as a teen, rebelling to the regimen. I was angry that the responsibility was being put on me. The teen years are hard enough without adding a chronic illness on top of it. At 16 it was quite overwhelming.
Unexpected adulthood: Around that time, I had access to the internet, which was such a huge learning experience. It really shortened the distance between people. I didn’t meet anyone else with HIV until I was 17, despite having it my entire life. My childhood, I was told that I was going to die. And then when I didn’t, and I did graduate high school, it was kind of this unexpected adulthood. “What do I do now? I guess I’ll go to college.” It wasn’t the same as for a lot of people, that it’s expected for you to go to college. For me, it was, OK, now that I’ve survived into adulthood, I need to learn how to manage this, and how am I going to provide for myself.
Insurance cap: Everything revolved around my medical care and getting health insurance, and making sure I could take care of myself. That’s one of the reasons I decided to go to college and graduate school—to get on an insurance plan. But health insurance plans back then, particularly student plans, didn’t have the kind of pharmacy cap that would accommodate the cost of HIV drugs. At the time, there was a $1,000 pharmacy cap. Since just one of my medications was $700 a month, I didn’t really know how to make that work. Now, because of student advocates who are living with chronic illnesses, the pharmacy cap is $100,000, which makes access a lot easier—and it makes it easier for you to get through your college or graduate school experience and help set you up for success.
Spreading awareness: While in grad school I traveled about 30,000 miles cumulatively to talk to college students about HIV and HIV prevention. I spoke about non-sexually transmitted HIV and being a lifelong survivor. I wanted to help make sure that people weren’t scared of being tested.
What if time is short?: When I finished my coursework, the first person I knew living with HIV died. He was 31 and I was 25. I had never been to a family funeral, so this was my first experience with death. I saw him about three weeks before he died. That shook me, it kind of set me back. I had gotten used to thinking, “Oh, I’m going to have this normal lifespan.” But when he died, I started to think, am I spending too much time on my academic career when I should be out living life? I was offered a job at the CDC, and federal health insurance was better than what I had, so I started work immediately.
Combination treatment: I went on a “drug holiday” between 2006 and 2011, at which point I was ready to go on combination pills. I took Trizivir, which had 3TC (lamivudine) in it, and went from taking four pills a day to two and was able to sleep through the night. Who doesn’t love sleeping through the night?
Treatment: One of the great things about having access to treatment is that you do get to have a somewhat normal life. You wouldn’t be able to tell I have HIV just by looking at me, it would be something that I have to mention. But again, here come these challenging, long-held beliefs—that people living with HIV are supposed to look sick. People think because I don’t look sick, it must not be a problem for me. They don’t realize all the work that had to go into making sure I had access to medication, like running up student loans.
Lingering stigma: The South is the epicenter of HIV, and that’s why I work here. People are receptive to my story; they see me as ‘innocent.’ But when I talk about friends who got HIV sexually or through drug use, they judge them. My friends are just trying to live the same life that I’m trying to live. There is still just that stigma we have to chip away at. Everyone just needs to meet someone with the disease.
Misperceptions: Because people only see what they see, that’s where you get the common perception that HIV is not a big deal, because people think all you have to do is take a medication and then you’re done with it. But they don’t really understand all the economics that go into that. They don’t understand what HIV stigma looks like: the fact that we’re still placing labels on people living with HIV, like, ‘they deserved it,’ or that they’re ‘dirty.’ There’s still this visceral reaction when somebody says they are HIV positive. I get a lot of ‘I’m sorry.’ What are you sorry for? That I lived? At its core, it’s a virus. We should treat it as such.
Overcoming illness: I’ve run five half-marathons and the Marine Corps marathon. I realized that even I had my own internalized stigmas. I thought I’d never be an athlete. I ran for charity, to raise awareness of HIV and also for HIV charities. It’s almost like a celebration of my body, paying respect to everything that it’s been through and the fact that it can still do more than I think it can.
Advice to younger self: If I wrote a letter to my newly diagnosed self, the top things I would say are:
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You’re not going die anytime soon.
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People will say hurtful things, so be prepared.
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People living with HIV are part of the solution not the problem.
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You are probably not related to Magic Johnson.
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Don’t flush your medication down the toilet.
- Just go out there.
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Stigma is going hurt, but it hurts more not even trying to do the things you want to do.
Fun fact: I taught Peter Piot, dean of the London School of Hygiene and Tropical Medicine, and co-discoverer of Ebola, the Macarena at the Googleplex, of all places.
Go here to watch the stories of those involved and those who benefited from the discovery of 3TC & FTC. Go here to read the full series of blog interviews with inventors, patients, and others.
Addendum: Nina was the first HIV-positive woman to donate a kidney to a HIV-positive recipient, read all about it in this CNN story.