Crossing the Line
In one of the most difficult decisions I've ever made, I started taking HIV medications recently. I crossed a line I said I'd never cross. I remember a conversation I had 13 years ago with a former roommate named Brian. We had both just turned 22 and moved to San Francisco. He feared he'd been infected with HIV because he was having symptoms that looked like seroconversion. We talked a lot about what he'd do if he were HIV-positive; he said he'd never take AZT, the only available treatment at the time, but would use Traditional Chinese Medicine instead. In solidarity with Brian, I announced that if I became HIV-positive, I, too, would never take AZT but would only use Traditional Chinese Medicine. How ironic that my gay roommate, like a kid in a candy store when it came to unprotected sex, didn't get HIV, but his straight, female roommate eventually did. (Honestly, I was like a kid in a candy store.)
On January 1, 1991, I was infected with HIV and I was diagnosed on January 9, 1993. Even though HIV medications weren't offered to me at the time, I knew I would have refused them. Within two weeks of my diagnosis, I found an acupuncturist/herbalist who I began to see three times a week. I felt like she and I were allies in the fight against HIV and the Western medicine establishment. As new HIV treatments came out, I dug my heels in even deeper -- I wasn't convinced that pharmaceuticals would be helpful to me or anybody else with this disease.
I became an activist and helped start an agency called Bay Area Young Positives, providing support to HIV-positive youth like myself. Many of the members of BAY Positives held views similar to mine about AZT and emerging HIV medications. For the first time in my life, I was part of a community. But, one by one, many of them joined protease inhibitor trials and started to see drugs as their only option. As more and more of my peers started to take the new HIV medications and discontinue natural therapies, it felt like my community was abandoning me. Hoping that I would be convinced of their benefits, I learned as much as I could about the medications. Because a big part of my job has been to provide treatment education and advocacy, I have become articulate about the virtues of antiretroviral therapy (ART), but somehow have held on to my negative views about the Western approach to treating HIV.
Before I started taking meds, I deliberated about what it would take for me to use ART. My medical providers had advised and even pestered me to take them for several years. I created an imaginary line in my mind about what it would take for me to begin ART. Whenever I approached that line -- my T-cells dropping to a certain level, my viral load increasing to a certain level, experiencing certain symptoms -- I moved the line farther away. This went on for four years, and I started to feel like an anomaly in the HIV community. The peer pressure was immense. The HIV community at large -- HIV-positive people, activists, treatment educators, researchers, conferences, medical and service providers, friends, colleagues, clients, the media, newsletters, and magazines -- are now all geared towards treatment. When people asked me what medications I was taking and I said that I'd never taken them, the responses ranged from shock to being told that I was irresponsible regarding my health by not being on medications.
I'm definitely not a non-progressor. Until the past couple of years, I'd been relatively asymptomatic, but have always had a very sensitive constitution. My T-cells steadily declined from a high of 500 when I was diagnosed to a recent low of 225. My viral load fluctuated between 6,000 and 70,000, but crossed that 100,000 line in the past year. The most troubling thing was my CD4 percentage. Last year it dropped to 9%, which officially gave me an AIDS diagnosis even though my T-cells were above 200 and I had never had an opportunistic illness. I started to experience troubling symptoms and decided to take a PCP prophylaxis. I developed oral hairy leukoplakia and struggled with persistent vaginal infections, which forced me to resort to using major pharmaceuticals to treat them. I had fatigue, depression, night sweats, chronic sinusitis, allergies, and gastrointestinal problems. Nothing was life threatening, but my quality of life was declining along with my T-cells.
Last year I had an epiphany that allowed me to more seriously consider medications. I admitted to myself, then to my Nurse Practitioner, that a lot of my identity was tied up in being "an HIV-positive female activist who has never taken ART." So many people had told me how lucky I was for being so healthy and not having to take medications. I'd never felt like a lucky person before. A second epiphany I had was that I was afraid to admit to my parents, my acupuncturist and my HIV-negative partner that I was considering treatment. I was afraid my family and partner would see me as sick rather than as a healthy person who can have a long life. I was afraid my acupuncturist would feel betrayed by me for "giving in." My medical provider validated my feelings around my identity and encouraged me to tell the people closest to me that I was considering starting medications. She said it would be good practice for me to hear myself say it and to test the waters. I took her advice, and the responses were positive and encouraging, which took a lot of the pressure off. My acupuncturist surprised me by saying she was upset that I hadn't shared with her how I was feeling sooner, that she was supportive of my decision and would work with me around any side effects I might experience.
My medical provider gently suggested that now was the time to seriously consider starting meds, but she wanted to address my depression first. She was concerned that I wouldn't be adherent with my depression as bad as it was. We went through a couple of antidepressants before finding one that worked, but within two weeks of starting the second one, I found myself whistling and starting to feel emotionally stable. Two weeks later, I marched into her office and announced that I was ready to start HIV medications and felt that I could stick to a regimen.
During the trial and error of stabilizing my mood, I consulted a close friend who is also HIV-positive about which regimen would be right for me. My friend is a treatment advocate and educator, and we went through the pros and cons of each of the antiretrovirals. I had criteria for choosing my combination: I didn't want to start off with a protease inhibitor for concern of developing high triglycerides, lipodystrophy and gastrointestinal problems; I was not going to take Sustiva for fear of exacerbating my depression and because of the central nervous system side effects; I wanted to avoid the "D" drugs -- d4T, ddI -- because of their implication in mitochondrial toxicity, lipoatrophy and neuropathy; I wanted to take pills two times a day at most and the least number of pills possible (I have difficulty swallowing pills); AZT scared me because of its mythology and its tendency to cause bone marrow suppression; Viread was brand new and my friend encouraged me to "keep it in my back pocket for future use"; 3TC was looking really good; and Viramune was starting to look good, although the possibility of developing a life-threatening rash and hepatic failure scared me.
Taking all of this into consideration, the combination I came up with was Viramune and Combivir, just two pills in the morning and two at night. I decided I would get over my attitude about AZT. My Nurse Practitioner said she would monitor me very closely during the first three to six months on the medications, and we would immediately address any side effects I might experience. Between her and my extended support system, I had a safety net.
On Monday, January 13th at 8:30 am, I took my first dose of Viramune and Combivir and, instead of fear, I felt excitement about the possibilities of my future.
During that first week, I was increasingly nauseous and by day seven was throwing up. I ended up taking five weeks off from work to adjust to the medications. I've always been a fan of marijuana, but I got to put the "medicinal" in front of "marijuana" and, honestly, that's what made it all bearable. Although the nausea was unlike anything I had ever experienced, it was all worth it when only a month and a half after crossing that line, my T-cells shot up to 510 and my viral load dropped to 1,400. Three months after starting the meds, my T-cells were at 592, my viral load was at 800, and my CD4 percentage rose to 17%. I've never had lab results this good or as much energy the entire time I've been HIV-positive. I'm so glad I went through this process. I've learned a lot about myself and I'm totally invested in maintaining my health -- and I've not missed a single dose.
Jennifer McGaugh calls San Francisco home. She's been active in the HIV community for over ten years and currently works as the Women's Services Coordinator for Shanti, an HIV and breast cancer organization. Some of her biggest passions are riding her 1978 BMW motorcycle, cooking, and going to see loud, live music.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.