Oct 18, 2010
AS THE CENTERS FOR DISEASE CONTROL AND PREVENTION prepares to release revised annual statistics about new HIV infections in the United States (in 2005 the number of new infections was 20% to 50% higher than previously reported--possibly as high as 60,000), HIV increasingly settles into the American consciousness as a manageable disease.
In the last several years, men who have sex with men have consistently accounted for about half the new infections--baffling a generation of men who lost scores of friends and lovers to what's now a known, preventable disease. While it's true that the HIV we know now isn't the one we knew then, isn't it still a life-changing illness?
We followed three HIV-positive men from late November through early December to get a look at what living with the disease in the United States is currently like. All three men are from relatively educated middle-class backgrounds. Their stories don't reflect those of people beset by poverty, unstable housing, active addiction, prison time, or other issues often existing alongside HIV as it increasingly becomes a disease of the poor, with African-Americans disproportionately affected.
Meet Adam Thompson, 29, of Charlottesville, Va., diagnosed with HIV in 2005; Charles Long, 28, of Albany, N.Y., diagnosed in 2001; and Oakland, Calif., denizen Nicholas Brinkley, 40, diagnosed in 1993. And ask yourself--just how big a deal is it to have HIV today?
WEEK ONE: BACKSTORIES
Adam grew up in West Virginia and was nearing graduation from Georgetown University when he plunged into the capital's gay Internet sex underground and became addicted to crystal meth. Drug-fueled unprotected sex led to his 2005 HIV diagnosis.
In many ways, Adam's life is back on track. In early 2006, he moved to Charlottesville, Va., where he tapered down his drug use, and he now works at the city's AIDS/HIV Services Group, where he'll soon begin counseling HIV-positive drug users. He is fairly close with his immediate family in West Virginia, including a gay father and a lesbian sister with a partner and a baby.
The drug regimen has been pretty easy. Once daily, Adam takes Atripla, which combines three HIV reeds in one pill, and he suffers no side effects while registering an undetectable viral load and a high, stable T-cell count. (When Atripla came out in 2006, it was hailed as the simplified HIV regimen that patients have been dreaming about for years.)
For the past year and a half, Adam's been dating Paul, 41, an HIV-positive contractor he met when they were both heavily using meth. They have unprotected sex, though Adam knows there's a slight chance that they could infect each other with separate HIV strains; Adam could also infect Paul with his hepatitis B, which is transmitted like HIV, or Paul could infect Adam with his hepatitis C (new evidence shows hepatitis C can be transmitted through unprotected anal sex, not just through sharing needles). "My doctor will shoot me when I say this, but we sort of leave it up to luck," says Adam, adding that they set one limit: Paul does not ejaculate inside Adam.
But HIV has complicated some things. Being HIV-positive hobbled Adam's dream of joining the Foreign Service, which bars HIV-positive people from serving. Adam's also observed "a marked difference" in the response he gets from potential sex partners when he tells them he is HIV-positive. "When I asked people to come over, there was no longer the promise of getting a piece," he says.
Most of all, he says, the diagnosis has led him to draw away from his extended family in West Virginia, especially from his grandmother, a strict Southern Baptist who he says was once the closest person in his life. Hence his next challenge: For Thanksgiving, he's preparing to go back to West Virginia for the first time in years and break the HIV news (if not the gay news) to his grandmother. His immediate family backs the decision. "My mother said, 'You have to give your family a chance to love you,'" he says.
Now working in Albany, N.Y., as an advocate for Housing Works, a New York City-based AIDS services group, Charles was raised in an upper-middle-class African-American family in a Chicago suburb and attended the Art Institute of Florence and then Chicago's Columbia College. But his coming-of-age was riddled with depression and self-esteem issues over being gay. "I would never call myself an addict," he says of his early 20s, "but I'd get ****** up." That led to spotty condom use and his 2001 HIV diagnosis. By spring 2002, his T cells were approaching the red-flag zone. "It was a weird flux period for me," he says of his first year with HIV, "before I'd made a clear plan for moving on and gotten over the initial I'm-going-to-die feelings."
Once he did, things got better. Charles started on a two-pills-twice-daily regimen but often missed doses, which can lead to drug-resistant HIV. He now takes the once-daily pill Atripla but still misses up to three doses a month (which on this regimen is generally not enough to develop drug resistance).
Charles has started seeing a 30-something HIV-positive guy who lives in Providence, R.I., and does similar HIV activism work. It's a bit of a relief after dating two guys who were negative. With one, he says, "we didn't have sex because he had a lot of fear issues around the HIV--and having someone you really care about being afraid of one portion of you is painful." Telling potential sex partners his HIV status is "extremely difficult," and Charles often relies on a plus-sign tattoo on his wrist to bring up the topic, or refrains from ejaculating completely during sex. Upcoming for Charles: Going back to Chicago for Thanksgiving, where he's already told his mom and sister--but few other relatives--that he's gay and HIV-positive.
Nicholas embodies the difference between men like Adam and Charles--who were infected in an era of effective treatment--and those like him who contracted the disease more than a decade ago. Many in his group burned through so many inadequate treatments that their HIV built up considerable drug resistance; for them, stable T-cell counts (above 200) and an undetectable viral load can be hard to come by.
But in the past year, a handful of new drugs have helped many longtime HIV-positive men like Nicholas finally get their HIV to undetectable levels. Boosting T cells is another thing: Nicholas has 58, a very low number that means in addition to his six HIV meds he has to take meds to prevent other kinds of infections. Add in Prozac for recurrent depression and a multivitamin, and Nicholas takes 16 pills a day--nine in the morning and seven at night. The week we first talked, Nicholas, a hairstylist, was preparing to start managing the front desk of a Berkeley, Calif., hair salon; it will be his first return to full-time work since 2004, when he was felled by cryptosporidium, a stomach parasite that can cause dramatic weight loss (Nicholas dropped from 220 to 140 pounds in five months) and is often very hard to treat in HIV-positive people.
As HIV goes, Nicholas has been lucky. Since November 1993, when he first tested positive, cryptosporidium has been his only HIV-related illness, and despite developing resistance to meds, he was spared the harsh side effects that affected many in the early days. For 13 years he's had the support of his HIV-negative partner, John, 37. They always use condoms for anal sex, but not for oral, though he won't ejaculate in John's mouth. "There was a point where he wanted to let me luck him without a condom," says Nicholas, "and I was just uncomfortable with it, because I didn't want to be responsible for [John's getting HIV]." Nicholas struggles to take all the doses of his meds, some of which need to be taken with food. "For the past several years I've been diligent, but I still occasionally miss because I fall asleep or something, and this creates a lot of guilt from the fear of building resistance [to the newer meds]." Nicholas's biggest worry is whether he'll be able to take all his meds while juggling full-time work again.
WEEK TWO: THANKSGIVING DRAMA
With his lesbian sister along for support, Adam tells his beloved grandma that he has HIV. "She just sort of looked at me," he says. "She said, 'Is that something you're going to have to worry about your whole life?' I said, 'Yeah, but I'm on reeds, and things are good and I'm not dying.' Then," laughs Adam, "she said, 'Well, I have bad kidneys that don't make hemoglobin anymore. Do you want a hamburger?'" He thinks his grandma might not have processed the news, partly because she doesn't have much context for HIV and partly because he hasn't yet told her that he's gay. "One problem per holiday," he says. Right now, he's just happy to be in touch with her again.
But other issues are coming up. For one thing, he is ready to go public with his HIV status when he speaks at a local World AIDS Day vigil on December 1. And he says that an hour after he takes his Atripla at night, "the room goes bendy, and an inferno starts in my body and I can't get to sleep." (Feeling high and having too-vivid dreams are common side effects of Sustiva, one of the three drugs in Atripla.) To quell the "inferno," he smokes pot. "It's not addictive like sleeping pills," he says.
Home with his family over Thanksgiving, Charles was taken aback to see his sister, who knows he's positive (his brother doesn't), looking over an HIV/AIDS fact sheet with her 10-year-old daughter. "Whenever any issue comes up around [HIV], I seem to be included," he says. He didn't consider telling his niece he was positive. "There were other people around," he says. "It wouldn't have been appropriate."
In the roughly five or six days since we last talked, Charles has taken his Atripla only twice, even though he knows it compromises the effectiveness. "I don't know why I can't get it together," he says. "I think it's almost a denial of sickness. I don't feel bad, so why do I have to take these pills every day?" Currently on an antidepressant, he wonders if the Sustiva in Atripla is contributing to his depression. (The drug causes depression in some takers, and exacerbates the disorder in those with a depressive history.) He has several other choices of HIV regimens, but none quite as simple as one pill daily. "I want to stick with what works," he says.
While in Chicago, Charles hooks up with an old fling who is HIV-negative. (He and the man he's dating in Providence haven't yet made any commitments.) "He doesn't know about that part of my life," says Charles of the hookup. "We just had play-around sex, and I did my normal avoiding of ejaculation." Ejaculating near or even on someone poses no HIV risk. "I just don't want it to ever come back where it was a possibility that I caused someone some kind of problem," he says.
Nicholas and his partner spend Thanksgiving with Nicholas's family at Dillon's Beach, north of San Francisco, the same place where in November 1993 he suffered the flu-like malaise that often signals the onset of HIV infection. His entire family has long known he has HIV, so he's not anxious about that--but he is about starting work next week. After three years of HIV-related illness and working only here and there, going back is "about my own self-respect and future comfort," he says, as well as paying off debt. He knows he'll have less time to work with the Sisters of Perpetual Indulgence, a longtime Bay Area gay group that does charity work while dressed as nuns. Nicholas is Sister Mary Juanita High.
By the middle of the following week, Nicholas is back to work--and loving it. "I enjoy feeling appreciated and needed by this group of people," he says. "I had this weird moment where I felt like I'd been away from life for the past couple of years, and now I'm back." Not that issues haven't arisen: He has to bring his huge 10:30 A.M. dose of meds to work with him. One day he forgot to take them and didn't do so until early that evening. Another day he forgot to bring them and had to drive back home, making him late to work. Moreover, he wonders if he should disclose his HIV status. "Maybe I should just tell everyone up front in case something happened and I fainted on the floor," he says. "But I don't want to feel obligated to tell them."
WEEK THREE: LOOKING AHEAD
Adam and Paul are on a day trip to Richmond, Va., the day before World AIDS Day when Paul's truck breaks down. They don't make it back the next day for Adam to speak at the vigil. "I was going to tell people"--negative or positive--"that the greatest thing they can do is to talk about their own HIV status and ask other people about theirs," Adam says. "Normalize the conversation."
Vigil or no vigil, he says that this World AIDS Day was for him a far more hopeful one than the last, when he was tapering down the meth and starting work at the AIDS agency. In the past year he's used meth only once every three months, but now that he's about to start helping active drug users quit, he's resolved to stop using completely: "How can I be effective if I can't even do what I'm asking them to do?" he asks. His goals for 2008? "I'd like it to be sober, healthy, focused on relationships with other people"--like his grandma, who is overjoyed that he is back in her life--"and not just constantly worried about getting sick." He also wants to play a more active role speaking up for the cause as an HIV-positive person pushing for federal AIDS funding.
Sometimes, he says, he feels chastised by an older generation of gay men who first took to the streets to fight AIDS. "Like they have a finger pointed at me, saying, 'You knew better.'" And how would he answer that charge? He says simply, "I made mistakes."
The past week has been busy for Charles. First he attended the CDC's National HIV Prevention Conference in Atlanta, where he met with activists from AIDS-impacted countries including South Africa and Haiti. He then took part in a demonstration blasting the CDC for not doing enough to reverse the U.S. epidemic. He also finally had intercourse with the guy from Providence, who was also at the conference. They didn't use condoms. Do they worry about STDs other than HIV? "We're both not having a lot of bathhouse sex," he says, adding that though the two haven't exactly clarified whether the relationship is open or not, "we're prioritizing each other in our lives."
The last time we talked, Charles was navigating traffic in the Bronx, trying to get to Brooklyn to look at apartments. He'll soon be working in New York City for Housing Works, and he was excited about the move from sleepy Albany to the Big Apple. His goals for 2008 include finally paying off the last of his credit card debt and going back to grad school to study philanthropy so that he might run a foundation or agency one day. "If I get really tired of AIDS, I can do fund-raising for Feed the Children," he says.
He thinks about the conversation he had in Atlanta with an activist from South Africa. "They don't look at HIV the way we do in the U.S.," he says. "They see it as a way for them to pull themselves up and start advocating actively for their lives." Does he see it that way too? "It's an epiphany moment when you get the diagnosis," he says. "You have to decide that you want to take on your life--and I said, 'I'm going to do what I want to do.'"
"I'm tired, but it's a good tired. I also feel energized," says Nicholas near the end of his first week back to work. Amid the week's hurry he nearly forgot that his prescription for Isentress, one of the new drugs in his regimen, now has to be called in to the pharmacy rather than his trial clinic. He did so at the last minute. And he bumped back his dosing schedule from 10:30 in the morning and at night to 8:30 so that he could take his meds before he went to work and not worry about missing doses.
Feeling healthy again, Nicholas is setting high goals for 2008: In addition to learning how to balance his job and his relationship, he wants to do a grueling 545-mile AIDS bike ride this summer--one he'd planned to do in 2006 before he got really sick--and he intends to do it dressed as Mary Juanita High! Speaking of her, he also wants to get back to his sisterly charitable work to once more make his life "not just about being focused on me" but "contributing to the world at large. I don't feel I could ask for any more than that."
But Nicholas still worries. "That's what most ***** about HIV," he says. "It's always looming, the potential that something could really drop on you. What if the energy of going back to work takes away from my immune system?" he asks.
He pauses. "Then again, a plane could come diving out of the sky and hit me too," he says. "So I'm not going to stand on my porch because that might happen? It's the same thing with HIV."
RELATED ARTICLE: Eulogy for a doomed vaccine: what happens when an HIV vaccine not only fails to prevent infection but may actually help cause it? Sean Kennedy assesses the second major vaccine study to go belly-up--and his own participation in it.
It was bad enough when a promising HIV vaccine's global trial was halted last September because the drug under study failed to prevent infection. But it got even worse when scientists discovered in November that in some of its recipients the vaccine might actually have promoted HIV infection. The twist was like a sick joke: A product designed to protect people from HIV could instead help them get it?
The vaccine under study--only the second ever to garner a critical Phase II clinical trial--was expected to be a major breakthrough in the fight against HIV. Developed over the course of a decade by drug company heavyweight Merck & Co. and being tested in nearly 3,000 people from North and South America, the Caribbean, and Australia, the vaccine was designed to stimulate the body's T cells in order to better ward off the insatiable virus. The previous vaccine to reach the Phase II stage had targeted antibodies, the immune system's other set of defenders, but it had proved a bust in 2003. Hopes were high that the T-cell approach would succeed.
Instead, a midpoint analysis made public on September 21 showed statistically comparable rates of infection for volunteers (all HIV-negative at the start of the trial) who had received the vaccine and those in the placebo group. What's more, in those vaccine recipients who became infected with HIV, the vaccine also failed to lower their virus levels--another area of inquiry for investigators. The vaccine was a loser, and there was nothing to do but stop the three-year-old trial.
It was a devastating denouement for anyone aware of the stakes--experts widely believe that a vaccine, if not a cure, is the only thing that can turn around the runaway HIV/AIDS pandemic. But like a thriller, this trial held one last plot surprise in store: People who had received the vaccine were in fact becoming infected with HIV at a higher rate than those in the placebo group. According to the latest data available, 49 of the 914 men who received the vaccine became infected with the virus, while 33 of the 922 who received the placebo tested positive. (The remaining 839 volunteers were women, only one of whom became infected.)
Suddenly what had been a straightforward story of loss became a vexing mystery. Although the vaccine was made with three HIV genes, they were synthetic--like Xerox copies of original documents--so it was impossible to get infected from the vaccine itself. That left two possible explanations: Either vaccine recipients who contracted the virus guessed that they had been vaccinated--like any legitimate scientific study, the trial was double-blind, meaning neither subjects nor researchers knew who received what--and, assuming they were protected, consequently engaged in riskier behavior. Or, more probably, the vaccine facilitated infection in some way.
Indeed, the leading hypothesis among investigators is that the vaccine somehow made the immune system more susceptible to infection. However, the increased susceptibility appears to be limited only to those vaccine recipients who had a preexisting immunity to the cold virus used in the vaccine to transport the HIV genes into the body. For reasons that still need to be determined, that was the group that saw an increase in HIV infection. If you had been given the vaccine but had lower immunity to the cold virus, your risk was likely no greater than that of the placebo recipients.
Either way, as a study participant, this was the last thing I wanted to hear.
I have always felt guilty for being HIV-negative. As much as we know about safe sex, the importance of protecting ourselves, and the ravages of AIDS, accidents still happen--including the accident of birth. What if I had been born early enough to arrive in New York City as a young man in the early 1980s, when the virus was just beginning to circulate, incubating among a generation of men who had no idea what was about to befall them? Fresh-eyed and adventurous, I would surely have died. Instead, I came to the city after college in 2000, having never met anyone who was positive. That difference in fates weighed heavily on me, a kind of spiritual survivor's guilt.
So when I learned three years ago in the course of my work as a journalist that an international HIV vaccine trial was enrolling gay men and other people at "high risk" (such as heterosexual black women) for contracting the virus, I decided to participate. I knew it would make a good story, but I also hoped it would assuage my feelings of guilt. Instead of helping just one person, as the save-a-starving-child proselytizers constantly beseech us to do, a viable HIV vaccine could benefit an untold number of people. It could even end the global epidemic. Medical progress so often relies on human guinea pigs--it seemed like my duty to participate.
Still, it was not a decision I made lightly. During the initial consultation at the trial site in a nondescript office suite in New York City's Union Square, one of 25 cities where the HIV Vaccine Trials Network conducted the study, a staffer apprised me of what lay ahead. Although the gist was simple enough--three injections of the vaccine over the course of six months, then follow-up visits that would slowly dwindle before ending 4 1/2 years later--the details were harder to comprehend. For one thing, I would have to give a lot of blood, sometimes filling as many as 32 vials, which would be sent to a lab for analysis. For someone squeamish about needles, let alone seeing my own red liquid outside my body, the prospect made me want to throw up.
Then there were more practical considerations, like the fact that because of the HIV genes that would be injected into my body, I would turn up as positive in routine HIV screenings. Consequently, I could be tested only at the study site (and as part of the study, I was, on a regular basis). If I needed to prove that I was negative for any reason--say, to visit a country that currently bars HIV-positive visitors, such as China--I would have to disclose my participation in the trial and provide documentation. I doubted people would understand. (In fact, they didn't: When I would bring up the subject in casual conversation, I realized that many people assumed I was HIV-positive, even though by definition a vaccine is given to those who don't have the target of prevention.)
But my biggest concern, as attested to by the mounds of paperwork I signed, was that there was no telling what could happen to me in this unprecedented experiment. Though I was reassured that the vaccine was innocuous, no one had received it before, so there was no long-term knowledge of its effects. If it worked (and I had received it), then great--I would be biologically protected from a most nefarious scourge. But what if it didn't work--or worse, had some unforeseen negative consequences? The staffer had no answers for me. That's how it is on the leading edge of science: murky and uncertain.
Yet my hand was forced when a friend of mine, nearing 30, suddenly became infected with HIV. Thanks to a single unsafe sexual encounter, his life was changed forever. It was too late to save him from infection, but maybe I could save others--maybe even myself.
Until this fall, the whole experience was as smooth as could be. The injections were akin to getting a flu shot, and the various sums of money I collected at the end of each appointment, between $25 and $75, were welcome pocket change. I would leave the study site, get a Jamba Juice around the corner, and go on with my life. I rarely thought about the trial; it was a nonissue.
The only time it became a problem was when I told a boyfriend about it. Normally I didn't disclose my participation to sex partners, since the vaccine couldn't affect them, but he was different. We were in a relationship, and I felt like he should know. So one night, in the middle of a certain sex act, I blurted it out. "Now you're telling me?!" he practically yelled. I shrugged. It seemed like an opportune time.
Being in the trial, I even learned a valuable lesson: that my own safe-sex regimen works. I've been tested more than a dozen times since I enrolled in the study, and every time the result has been negative. It's embarrassing to admit now, but I didn't get my first HIV test until I was 25 because I was irrationally afraid that it would come back positive, even though I had never engaged in unsafe behaviors. To know that I was effectively shielding myself was tremendously reassuring.
And then, of course, I discovered that maybe I hadn't shielded myself at all--that maybe, instead, I had inadvertently thrown myself into the lion's den. When a trial staffer called in November to inform me that the vaccine might have promoted HIV infection and that all study volunteers would be "unblinded" so they would know what they got, I didn't quite understand her. "Isn't an HIV vaccine supposed to prevent infection?" I asked. The staffer nervously laughed.
It wasn't until the following day that the reality of what had happened started to sink in. There, on the front page of The Wall Street Journal's Marketplace section, was a story whose headline said it all: "Canceled Vaccine May Have Boosted HIV Risk." I started to feel anxious. All my initial concerns about participating in the study came roaring back to the forefront of my mind. Had I put my body on the line for science only to have harmed it?
I didn't know the answer to that yet, but the vaccine effort itself was clearly damaged. As Anthony Fauci, the well-known HIV researcher who directs the National Institute of Allergy and Infectious Diseases, which provided funding for the trial, told the Journal, the vaccine's failure will force the field to "relook at everything."
"It's just extraordinarily disappointing to be faced with another vaccine that is not effective," epidemiologist Beryl Koblin, the principal investigator for two of the study sites in New York City, told me recently. "Sometimes it's hard to find the words because of the urgency, and that desire to be able to find a vaccine as quickly as possible." Indeed, at an HIV Vaccine Trials Network conference in Seattle in November, where the troubling results were announced, one staffer told me she had never seen such grief.
As for the apparent increased risk of infection, Koblin said, "For me, personally, that is just really hard. You never want to put people at more risk than is already there." But she cautions that there's still a "huge amount of data that needs to be sorted through to see whether there's a true biological effect going on." A special committee has been charged with assessing the results; study participants will also be tracked. There are lots of factors to consider. Among the clues: People from outside the United States or Europe tend to have a higher prevalence of immunity to the cold virus used in the vaccine; non-Americans in the study were also less likely to be circumcised. What does it all mean? Only time will tell.
From a public relations standpoint, however, this has to be a disaster, right? Koblin said that so far, recruitment for the various Phase I trials she oversees--there are more than 30 currently under way worldwide--hasn't been affected, but she knows there may be problems down the road, when volunteers are needed for a Phase II trial of a new vaccine. One had been set to start last September, but it was scrubbed when the Merck vaccine failed. It's now being redesigned, and she thinks it could begin in another year.
"We have to keep going," Koblin said. "But we need to be really careful about how we proceed."
In December, I went to the study site to find out whether or not I had received the vaccine. Volunteers who had been given the placebo would be eligible to participate in future vaccine trials, and before my appointment, I wondered if I would want to. I was hoping I had been given the placebo simply because I wouldn't be at higher risk of contracting HIV, which would be a relief. But it would also mean I would have to decide whether to put my life on the line again. It seemed like a game of Russian roulette: Spin the barrel of the gun and you could be fine--but maybe not.
"What do you think you got?" Leah Strock, a nurse practitioner and the resident clinician, asked me. Over the last three years I had grown quite fond of Strock, a doting big-sister type and former punk rocker who had dated the cartoonist R. Crumb in the 1980s. I told her I hadn't really thought about it. "You'd be the only one," she said with a laugh. (Jokes aside, all the study participants have been very understanding about the turn of events, Strock told me. One who learned he was at increased risk took the news in stride, pragmatically deciding to use condoms for every kind of sex act going forward.)
Strock was waiting for an answer to write down on the sheet in front of her, so I said "placebo," which is what I was praying for. She turned to a spreadsheet that listed all the participants at the site, coded by numbers. Next to my number it said "vaccine." My stomach turned over. "But you don't have the immunity to the cold virus, so you're fine!" Strock quickly added. My mood lurched again. I wanted to hug her.
As happy as I was, it also meant that, for better or worse, I could never again participate in an HIV vaccine study. The decision was made for me--and I can't say I'm unhappy about it.
Kennedy is The Advocate's news and features editor.