March 26, 2008

Martell Randolph

Martell Randolph is starting to live her dream: She’s studying to become an English teacher. Teaching was among the life plans she says she put aside when she was diagnosed with HIV in 2000. Since then, she has faced more than the normal challenges of positive people: She has HIV-2, a strain of HIV less common (and less understood) than HIV-1. HIV-2 doesn’t respond to some antiviral meds and cannot be measured by any of the viral load tests available in the U.S. At the time of Randolph’s diagnosis, it didn’t even register on the HIV antibody test. But Randolph hasn’t crusaded only for herself and others with the unusual strain. She is also an eloquent speaker on issues facing all women living with HIV, no matter the strain.

How did you become involved in AIDS service work?

It was before my diagnosis. I had lived in Europe, then in New York City, and I saw the epidemic growing. I hadn’t lost any friends to AIDS, and I didn’t see it as something that affected me directly. But I wanted to help out; I wanted to do something where I felt I was making a difference. I saw what an integral part of the epidemic New York City’s Gay Men’s Health Crisis (GMHC) was, and in 1998 I began helping out there with fund-raising. I also contributed at their lunchroom program and programs for women and kids. It felt like the right place for me to be. They were doing a big push to get people tested. But I still didn’t see myself as at risk—the message didn’t call to me. I thought I should go and help, not go and get tested.

Working at GMHC turned out to be divine intervention once I got my own diagnosis. [Being diagnosed with HIV] would have frightened me otherwise. But the environment at GMHC was nurturing; it allowed me to deal, to learn, to educate myself. I wasn’t discriminated against [for being positive]. I thank my lucky stars that I was there.

Talk about your diagnosis—and about encountering HIV-2.

I was very sick in 1999, but the battery of tests the doctors gave me didn’t show anything except low T cells. At one point, a doctor suggested testing for HIV, but two tests came back “inconclusive,” because they couldn’t detect HIV-2. [Today, the Orasure and Oraquick tests can register antibodies to HIV-2.] The doctor and nurses said they didn’t know what was going on, so I went to a doc who specialized in HIV. He said, “There might be something else going on. Have you ever heard of HIV-2?” He told me where HIV-2 is located—in some parts of West Africa—and reviewed my history. In the early ’90s I’d been in Europe and dated someone from West Africa. And then a viral analysis showed that it was HIV-2.

What treatment did you start on?

I had pneumonia and only 13 T cells when I was finally diagnosed. HIV-2 doesn’t respond to the entire class of non-nukes like Sustiva, so the doctors didn’t know what to put me on. My first regimen was monotherapy with Kaletra. Since I was treatment naive, they thought that would be the best shot. My T cells went up to 1,100 and stayed that way for years, but then I developed resistance, because I was only on one drug. Now I’m on Truvada and Norvir-boosted Prezista twice a day.

How did you learn more about HIV-2?

I had to find an HIV doctor who knew about HIV-2—there weren’t many who did. If a doctor doesn’t know, for instance, that HIV-2 doesn’t respond to the non-nuke class, they can hurt their patients. Then I started going to every conference I could find. I buttonhole researchers at conferences. I need to get the widest audience possible. At international conferences I find people who are interested in HIV-2. That’s how I found someone in the Netherlands who can measure my viral load. The HIV-1 viral load test doesn’t work for HIV-2. I have to send blood samples off to the Netherlands for viral load testing.

There is an influx, particularly here on the West Coast, of West Africans, so we might begin seeing more HIV-2 [in this country]. If someone tells me their [HIV] test was inconclusive or indeterminate, it sends up a flag. But I have never run into anyone like me—the others with HIV-2 have all been from West Africa.

How did you end up in LA?

I was wrapping my head around what my diagnosis meant, putting my life back together. A part of me had stopped living. There’s a point—it’s different for each person—where you need to stop and deal with the diagnosis. I needed a break to do that introspection. Initially out here I got services and checked out the community. It embraced me. I worked as a health educator, teaching women the importance of adherence. I felt I was helping others—especially those women.

There is no medication to help you adjust to having HIV. Other than counseling and group work, there’s no way to do that. If [newly diagnosed] women don’t get support, care and hand-holding, they go off the radar for years. They just go underground—the emotional stress devastates their lives. I help [newly diagnosed women] engage in things to help handle emotional stress. Taking the meds can let them have a life. I implore women to use the resources that exist.

What do you consider the biggest challenge facing positive women?

It’s that women don’t take care of themselves. They are used to being caregivers and nurturers, so they put themselves last. It has to be about self-empowerment and feeling deserving and entitled to the services to help you through this. You have to take care of your own health to make sure you can be here for your child’s graduation.

The challenge in terms of policy is that the NIH needs to set up guidelines to force pharmaceutical companies to include women [in trials], so that we can have real data about how HIV meds work for women.

You are also involved with activist groups such as ATAC (AIDS Treatment Activists Coalition). Do you think activism has changed since you first entered the world of AIDS agitation?

There’s a sense of complacency today. We’ve been so successful—we have lots of meds, more than 25 or 26; we have more social support programs. I say this with bated breath because there are still places where people are on long lines waiting for meds. So we need more.

HIV is being marketed as a manageable condition, and we don’t see the numbers of people [who are still] dying. Because we’re living longer, more normalized lives, having better quality of life, the public response is that it’s not a crisis. The HIV-positive community knows that is not true. We still see increases in new HIV cases that we haven’t been able to reverse. That says we haven’t provided the word out there on prevention. We still need a huge push for getting tested. We are losing precious resources.

Along with going to school and becoming an English teacher, are there other deferred dreams you are fulfilling now?

My fiancé! I met the most incredible man online on POZ personals [personals.POZ.com] two years ago. He’s a musician [in] Australia. We have sent each other close to 10,000 e-mails and he’s been here to visit three times. He proposed last May and I accepted. I had let this dream go, but just as I was about to tuck it away in my pocket, he appeared.

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