The year 2004 has come and gone, and to HIVers it may feel as though the virus has been around for a thousand New Year’s Eves. Whether you’re lifting your (med-cocktail) glass to a new year and a new you for the first—or the 21st—time, taking responsibility for your own health is No. 1 on every HIVer’s must-do list.
The issues and questions about the virus and the meds and their complications—resistance, lipodystrophy, changes in your heart, liver, kidneys and sex life —are increasingly challenging, but patient empowerment is as fresh as ever. It all begins with learning about HIV itself, the drugs and your own body so you can partner with your health-care provider to figure out what you want your treatment to look like. It also means not just sitting around waiting for the meds to work (or for better ones to come along). The idea is to get healthy, right? So maybe make January 1 your first smoke- and booze-free day and stick to your pill-taking regimen, trade junk food for veggies and get plenty of exercise. And exercise your rights and responsibilities as a fully sexual, loving human being. Then, like the following four HIVers—whose treatment resolutions may make yours look easy—decide where you want to be within a year, and start mapping your path to that goal (including a backup in case Plan A goes awry). And be warned: We’ll be checking in with you (and our fab four) to see how you’re doing—all year ’round.
Eric Bray, 38, Seattle
Herbal Essence: For six years, tae kwan do black belt Eric Bray has blended herbal remedies with HAART, a mix he credits with pushing his CD4s from 187 in 1997 to today’s 900. But his total cholesterol has oozed up to 242 and triglycerides to 474 (more than twice what’s safe). His nurse practitioner, Joey Merrifield, blames Bray’s family history, not his protease-free combo (Viread, Epivir and Viramune).
Fat Attack: “After Eric’s latest labs,” Merrifield says, “we need to [consider] a pharmaceutical lipid-lowering agent,” like Pravachol or Lipitor. But Bray worries “that statins, like antivirals, can be hard on the liver,” so he’ll sidestep the scrip by tucking more fiber, fresh fruits and veggies into his lunch box. He may also bolster his regimen of hawthorn berry extract for blood pressure, vitamin B6, fish oil and gingko (a blood thinner) with extra niacin and garlic supplements.
High Spirits: Bray will kick-start his exercise combo, too, adding the “emotional and spiritual benefits” of tai chi and Qigong. “There’s always going to be problems with HIV,” he says. “You need something to help you deal.”
Alicia Rhoden, 45, Los Angeles
Substance Abuse Counselor,
The Resolution: Find Dr. Right
How: Get up, stand up
On the Rocks: After living with HIV for 21 years, Alicia Rhoden knows a thing or three about treatment. Since 1990, when she weighed 50 pounds and had no CD4 cells, HIV meds have pumped her CD4s above 389 and slashed her viral load to undetectable. But finding the ideal medical partner hasn’t been as smooth. How’s her current doc’s bedside manner? “He’s rude,” says the recently remarried mother of 23-year-old twin girls. “He doesn’t answer my questions and won’t look at all my conditions together.” With epilepsy, sarcoidosis (lung inflammation unrelated to HIV) and the virus, Rhoden takes almost 20 pills a day and worries about med interactions—but says her doc dismisses her fears.
Trading Up: Rhoden is changing HIV docs to get “better communication than I get with this one,” she says.
New Model: She also wants help with family and marriage issues. “Some doctors don’t know where to refer you,” Rhoden says, adding a personal resolution “to speak up for myself and know when to press for answers” to get what she wants.
Greg Webber, 36, Knoxville, TN
A Bumpy Past: Greg Webber noticed fat gains on his back and chin two years ago but shrugged them off. “I wanted to be sure I wasn’t being paranoid,” says the psych major. Sure enough, it turned out to be lipodystrophy (fat redistribution)—and he was also losing chub in his arms and legs. A combo change helped restore some limb fat and keep his CD4s at 776 and viral load undetectable. But Webber’s face and back stayed lumpy, and he says he’s “tired of people asking, ‘What happened to your face?’”
Losing It: After persuading his insurance company to cover off-label use of Serostim (human growth hormone, about $7,000 a month) for fat accumulation, Webber began daily shots. “At first, I felt like someone had given me a shot of youth, ” he says. But two weeks later, Webber had found that Serostim has its own side effects: painful swelling in his face, feet and hands.
Sticking to It: When his doc halved his Serostim dose, the swelling waned. Webber is resolute: “It might take longer to see results,” he says, “but I’m OK with that. This is something I may be using for a long time.”
Paul Muller, 51, Bronx, New York
Peer Educator, Diagnosed 1980
The Resolution: Punch down HIV and side effects
How: A combo switch
The Backstory: As if battling HIV and hepatitis C weren’t sufficiently sucky, Muller also has myopathy (muscle weakness), which his doc links to Zerit, which has been in his combo since 1996. So with 33 CD4s and resistance to 12 HIV meds, the recovered 21-year IV-drug user is ditching Zerit for once-daily Truvada (Emtriva + Viread) with his twice-a-day Kaletra.
The Backup: Muller’s doc wants him to reinforce the new combo with Fuzeon injections. Muller is hesitant, but not because he fears relapsing. “I’ve been clean for 18 years,” he says. “It’s the hassle and the nodules at the injection sites I don’t want.”
Back to the Future: Muller says he will turn to Fuzeon, however, if a Truvada/Kaletra combo alone doesn’t prevail over his HIV (recent data suggest that adding the new PI tipranavir to Fuzeon may provide him even more power). He won’t consider it a defeat though—just a compromise. “My body is a building, and I just have a couple tenants I can’t get rid of,” he says. “You have to learn to live with them.”