For the first six years of the AIDS epidemic, the only advice available to patients was to wait. From 1981, when the first AIDS outbreak was recorded, until 1987, when the FDA approved AZT, the first antiretroviral medication, more than 40,000 Americans waited until their immune systems collapsed and their bodies succumbed to opportunistic infections. They died agonizing deaths.
Ron Woodroof, the Texas man played by Matthew McConaughey in the new film Dallas Buyers Club, was supposed to be one of those people. When Woodroof was diagnosed with HIV in 1986, his doctor told him he only had a few months to live. Instead of accepting this fate, Woodroof, a promiscuous heterosexual drug addict and electrician, muscled his way into a clinical trial of AZT. For many patients—Woodroof included—AZT was toxic and only of temporary value since the fast-mutating AIDS virus could quickly build resistance to it. Reeling from the side effects of AZT, Woodroof started importing gentler drugs from abroad that hadn’t been approved in the United States and then selling them illegally to hundreds of eager buyers in Dallas’s AIDS-patient underground.
The Dallas buyers club was just one of dozens of such clubs around the world that trafficked in unapproved AIDS medications. As it turned out, the vast majority of these drugs turned out to be useless. It wasn’t until 1996 that patients could get their hands on the real miracle drugs—antiretroviral cocktails with protease inhibitors that halted the development of HIV by attacking the virus in several different ways at the same time. Today, these drugs are so effective that people with AIDS enjoy nearly average life spans.
Dallas Buyers Club, which begins to open across the country today, tells part of the ARV story. But Playboy wanted to document the rest of it—the good, the bad, the illegal—by speaking with the patients, doctors and activists who have swallowed, studied, hoarded, trafficked, thrown up, prescribed and protested these magic pills from the very beginning.
Derek Hodel, Executive Director of the New York City buyers club People With AIDS Health Group (1989-1992): Our club was founded in 1987 because of a substance called AL-721, a mixture of egg lipids that had been studied in Israel and had some potential anti-HIV properties. Everyone assumed that because it was made out of egg it was safe. The club bought the lipids from a nutritional supplements manufacturer and began to distribute them in a big way. No one knew how the government would respond; the founders of the club started out in a church basement because they assumed the FDA would be less likely to raid a church. I think they thought the FDA operated a SWAT team with guns.
The lipids themselves were refrigerated. You showed up at a specific time with a cooler and a certified check. It was crazy. You had to sign a release acknowledging the club wasn’t recommending them and that you wouldn’t hold it responsible for what AL-721 might do to you. Still, the club had $20,000 worth of orders within a few hours and $100,000 worth of orders within a couple of days. The demand was overwhelming. The FDA basically looked the other way.
When I took over the club two years later, other drugs had become of interest. The first was dextran sulfate, which was sold over-the-counter in Japan as a blood thinner. The club sent people to Japan to buy huge amounts of dextran sulfate and smuggle it back into the country by mislabeling it as Chinese dolls. But people lost interest in Dextran Sulfate when studies showed it wouldn’t have the impact they had hoped for.
Several other drugs, however, continued to hold promise. A number of antifungals and antibiotics—fluconazole, itraconazole, roxithromycin and azithromycin chief among them—were useful for treating opportunistic infections that normally killed people with AIDS. To obtain them, we found people overseas, usually at the retail pharmacy level, who would sell them to us. They had a good incentive: We paid them shitloads of money.
But the reality was that the clubs didn’t help very much. Thousands of people came to us, and many of them were really, really sick. Most of them died. We might have helped some of them hang on until 1996, the year everything changed, but it’s unclear.
Aside from its toxicity profile and its potential to cause resistance, another big problem with AZT was its $10,000 annual price tag. Most insurance providers covered the drug, but people who didn’t have insurance when they were diagnosed with HIV were shut out. Insurance companies considered HIV to be the mother of all “pre-existing conditions.” The only option for people without insurance was to sell off their assets and to try to get on Medicaid. To forcibly lower the cost of AZT, a group of New York City activists from ACT UP (the AIDS Coalition To Unleash Power) stormed the New York Stock Exchange on September 14, 1989 to protest what they claimed was blatant profiteering by AZT’s manufacturer, Burroughs Wellcome.
Peter Staley, an ACT UP member and former bond trader who was diagnosed with HIV in 1985: We had noticed on TV that traders wore badges on their lapels. They had the name of the trader’s firm on them along with a four-digit number. To replicate them, we went to a place in Greenwich Village that makes fake driver’s licenses and told them to make badges that said “Bear Stearns.”
We wanted to test the badges in advance so we could get inside and determine the ideal location to cause a ruckus. Two days before the action, we dressed in suits and walked in with the smokers’ rush before the opening bell. We noticed an antique wooden VIP gallery—a kind of balcony thing with a rickety little staircase—overlooking the floor. It had a big blue NYSE banner over it, which was the perfect backdrop.
As we’re checking everything out, an older trader walks up to me and says, “Hey, you’re new!”
I started sweating and said, “Yeah, brand new! Bear Stearns!”
“That’s weird. I didn’t know the badgenumbers went above 3,000,” he responded.
It turned out we didn’t know the badge count. “I guess they just started doing that,” I told him. Luckily, he bought it, welcoming me aboard with a handshake.
We went right back to the place in Greenwich Village and asked them to re-do all the badges with new numbers.
On the day of the action, we strapped a large chain and handcuffs under our suits. One of us wrapped a large banner that read “SELL WELLCOME” around his torso. We put small foghorns in our pockets. Just like during our recon mission, we walked in with all the smokers and headed straight for the balcony, where we padlocked the chain to the bannister and handcuffed ourselves to the chain. Ten seconds before the opening bell sounded, we unfurled the banner and sounded the foghorns. Then we started throwing these fake $100 bills on the floor; the back of them read, “Fuck your profiteering. We die while you make money.”
The traders became rabid. They started throwing the fake bills back at us, all the while screaming, “Faggots!” I knew how it would be from working as a bond trader. A trading floor is like a high school locker room: It’s racist, sexist, homophobic and filled with testosterone. When the security guards finally located a chain cutter and attempted to march us to the administrative offices at the Exchange, the traders were trying to get past the guards to punch us.
The action worked. (Many more protestors picketed outside the Exchange.) Five days later, Burroughs Wellcome reduced the price of AZT by 20 percent, one of the only times in Big Pharma history that a drug company has lowered the price of a medication in response to protests. Activists, however, weren’t the only ones hacking the system. Doctors also played a pivotal role in helping their patients get access to experimental drugs.
Bill Valenti, an AIDS physician who ran a clinic in Rochester, New York: Not everyone qualified for clinical trials, but we did our damndest to get them in anyway. For example, if a patient’s red blood cell level was too low because they were anemic, we would transfuse them so they would temporarily meet the criteria.
My infectious diseases colleagues had no idea what we were doing. On Friday nights, after our head nurse went home, we opened up an underground clinic from 6 p.m. to 9 p.m. and gave people Compound Q, an experimental drug made from Chinese cucumber. We obtained it through a middleman—a gay PhD student—who got it from San Francisco.
Patients often came in with their own drugs. The egg lipids, AL-721, were huge in New York City at the time. Everyone was putting them on their toast and eating them like butter. There was a lot of hocus pocus out there. More than a few times I told patients, “You shouldn’t do that.” I was especially leery of ozone therapy, which involved sucking out people’s blood and replacing it with a fluid that contained ozone. When you start draining someone’s blood, you’ve gone off the deep end—at least in my medical opinion.
Sympathetic doctors couldn’t get everyone into clinical trials, though. In particular, women were shut out—generally speaking, women were neglected during the first decade of the epidemic—in part because of concerns about how ARVs might affect their fetuses should they happen to become pregnant while being treated.
Mary Lucey, an AIDS activist who was diagnosed with HIV in 1989: They didn’t know how much medication to give to women. I was six months pregnant when I was diagnosed, and they just slammed me with 1500 mg a day of AZT. The doctor had me coming in the back doors of the clinic. He didn’t want me speaking to anybody. Finally, he told me, “You’re going to have to find someone else to deliver this baby.” The hospital flat refused. They’d never had a positive woman.
The pharmaceutical companies were scared of becoming liable for anything that happened to the baby. They just wanted us to go away. There were actually clinical trials that demanded sterilization to get access to the meds they were testing. I knew several women who were sterilized so they could qualify.
In May 1990, I remember walking into AIDS Project Los Angeles. I was using a cane because of the AZT. I wanted to sign up as a client, but they looked at me and just said, “Sorry, we’re not hiring right now.” I said, “Why would you think I'm here for a job?” It didn’t even occur to them that a woman would walk in who was HIV positive.
1996 was the turning point. At the meeting of the International AIDS Conference in Vancouver, scientists presented evidence that a new type of combination therapy using protease inhibitors along with older AZT-style medications—the famous antiretroviral “cocktail”—had the potential to bring very sick patients back to life. People called it the “Lazarus Effect,” after the biblical figure Jesus raised from the dead.
Phill Wilson, founder of the Black of AIDS Institute: Inearly 1996, I was taken to the intensive care unit for pneumocystis pneumonia. I basically couldn’t breathe. When I got there, though, the doctors discovered other problems, too—for example, I had an infection in the lining of my heart. That’s when they started the HIV cocktail.
Shortly thereafter, I started getting better, and I was moved out of the ICU. And shortly after that, I was flying up to San Francisco to interview for a job and to escort a friend down the aisle at her wedding. The surprise wasn’t that I got better. I had seen that happen before, including with my partner who died in 1989. People with the virus would get really sick and then they would come out of it only to get really sick again. And so, we had all experienced getting sick and getting better, getting sick and getting better. But in reality, your immune system was getting worse; you just didn’t notice it. The HIV cocktail changed all that. The cycle finally had been broken.
But as previous struggles over access to AZT and alternative medications had made clear, the fact that effective drugs existed didn’t mean that patients would be able to obtain them. Cost remained a significant barrier—as did prejudice. In the United States, for example, it was common for doctors to refuse to prescribe ARVs to patients they suspected of not being responsible enough to adhere to the medication, which some worried—wrongly—would lead to the creation of a treatment-resistant AIDS superbug. As a result, intravenous drug users, homeless people and those in the developing world with AIDS often went without treatment.
Charles King, co-founder of Housing Works, a service organization dedicated to homeless people living with AIDS: Doctors would say to addicts, “If you want ARVs, go into drug treatment.” Or: “Once you’re sober, we’ll provide you with ARVs.” For homeless people, the response was, “You don’t have refrigeration, and these drugs require refrigeration.” Or: “We can’t guarantee you’re going to be able to take this with food.” For some reason, though, the solution wasn’t helping them get access to a refrigerator or get food. Instead, it was, “We’re not going to prescribe.” Here we had these miracle drugs, and yet, there was a large group of people who were being denied the miracle.
At the same time, there also was a perception that people in developing countries weren’t going to understand the importance of adherence, much less be able to manage a complicated drug regimen. There was almost this idea that if we let the developing world have access to ARVs, they were going to ruin it for the rest of us. This, of course, was always a myth.
ARVs came to the developing world en masse from an unlikely source—Republican President George W. Bush. His father, George H.W. Bush, who served as Ronald Reagan’s vice president from 1980 to 1988 and then as president from 1988 to 1992, was reviled by activists who believed that the government’s callous inattention during the epidemic’s early years led to hundreds of thousands of preventable deaths. But on this count, W. proved not to be his father’s son. During his 2003 State of the Union address, Bush announced the creation of the President’s Emergency Plan for AIDS Relief (PEPFAR), a $15 billion program aimed at distributing antiretroviral medications primarily in Africa and the Caribbean.
Dr. Salim Karim, Director of the Centre for the AIDS Programme of Research in South Africa: In a way, PEPFAR has had the biggest impact in South Africa because for a while it provided the only source of drugs in the country. At the time, South African President Thabo Mbeki didn’t accept that HIV was the cause of AIDS. He was also against ARVs, which he thought made patients worse. The government later changed its position, but for the first two years of PEPFAR, if you wanted treatment in South Africa, you had to come to a clinic funded by the Americans.
The distribution of ARVs brought back hundreds of thousands of South Africans from death’s door. In the late 1980s, Saturday was the day for shopping, sports and recreation in the townships. In the late 1990s, Saturday was the day for funerals. People would go from one funeral to another—mostly funerals for young people who had died of AIDS. Ever since PEPFAR, Saturday is once again a day for shopping, sport and recreation. That’s how much of a difference ARVs have made here.
As ARVs have gone global, HIV rates in the developing world have begun to recede. The decline owes itself mainly to an important property of ARVs: Once people are on treatment and have their diseases under control, they’re much less likely to transmit the virus. If there are any lucky breaks in the history of the AIDS epidemic, the fact that “treatment is prevention,” as the public health jingle goes, is perhaps the most important.
Along the way, researchers also noticed that ARVs can prevent HIV-negative people from ever getting infected in the first place. One of the most promising new strategies for fighting the epidemic is called Pre-Exposure Prophylaxis (PrEP), i.e., putting high-risk people on ARV medications before they ever have the chance to turn positive. One recent study suggests that taking an “AIDS prevention pill” every day such as Truvada, a common ARV, can reduce the risk of infection by 99 percent.
Michael Lucas, gay porn star and PrEP proponent: My doctor recommended PrEP because, in his words, “You are in a profession where you have a lot of sex,” which is actually not true. I make a movie maybe once every three months, and whenever I shoot, I use a condom. So the problem isn’t justwith sex workers; the problem is with sexually active people. You can go on Grindr and have five partners in one day.
But I’m nervous when it comes to my health. I get tested every three months, and every time, I'm paranoid—even though I feel I’m at low risk. So I took my doctor’s advice.
And he was right.
Just in the last year, a number of young guys I know tested positive. I took two of them to their tests. It never would have happened had they been on Truvada. I wish well-known people would speak out about Truvada. Unfortunately, when I talk about it, people say, “He’s a porn star. He fucks 25 times a day.” It would be nice if a famous writer or actor came out in support of Truvada.
Prevention is the new frontier. While a vaccine is the Holy Grail, we’re still years away from having one. Today, the goal is to prevent as many new cases as possible and treat people the best we can while we hold out for a vaccine.
Anthony Fauci, Director of the National Institute for Allergy and Infectious Diseases: What excites me most in the medium-term is the possibility of a long-acting ARV—something you don’t have to take every day. That could be either a shot you’d get once every three months or an oral formulation. It would have a positive impact on the adherence to drugs not only of people already infected, but also for high-risk people who need to take drugs to prevent infection. The drug companies are working on it—a shot is probably a year or two away.
Vaccines are an entirely different concept. It’s much easier to develop an ARV than a vaccine. With an ARV, you put it in a test-tube. If it suppresses the virus, you do a phase one trial in a human to determine if it’s safe. Then you do a phase two trial and a phase three trial, and you measure the level of virus. If the virus goes away, you’ve got an effective drug that you can market and sell. With a vaccine, there are so many other factors. For instance, you have to include thousands of individuals in your testing cohort and keep it going for years; whereas with drugs you could do it with a couple of hundred people and you’re done. So a vaccine is still far in the future.
That said, we’ve come a long way. There was a time in the not-so-distant past when someone who was HIV positive had to take three separate pills five times a day. There was an over-determined fear that if a patient missed one dose or missed a day, the ball game was over. That turned out to not be the case. You want to be consistent about taking the drug every day, but all is not lost if you miss a dose.
By 2020, we should see a significant shift in the curve of the pandemic where new infections dramatically falloff, mostly as a result of putting more people on treatment. That’s the great thing about these drugs—you get a twofer: (1) You save lives; and (2) you decrease the likelihood that HIV-positive individuals will infect anyone else.
Christopher Glazek is a writer in Los Angeles and is the founder of the Yale AIDS Memorial Project. His writing has appeared in New York Magazine, n+1, The London Review of Books, and on newyorker.com. Follow him on Twitter @seeglazek.
Photo: © Cultura RM / Alamy