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Pitt Men's Study put our city on the map in the battle against AIDS
Sunday, May 23, 1999 By Anita Srikameswaran, Post-Gazette Staff Writer
In the early 1980s, gay bars were stalked by vampires.
On any night of the week in the basements and back rooms of bars throughout southwestern Pennsylvania, gay men willingly bled for them, encouraged by bar owners who offered free beer.
The "vampires," as they came to be nicknamed, were University of Pittsburgh researchers, and they weren't nearly as fearsome as what they were seeking: the cause of AIDS.
They started looking in 1982, two years before the human immunodeficiency virus was even identified. That initial effort won them the opportunity to take part in a national project called the Multicenter AIDS Cohort Study, which took the first steps toward understanding the natural history of HIV in the homosexual male. MACS, as it's known, officially began in April 1984.
The Pittsburgh researchers also developed their own investigations into the virus and named the local project the Pitt Men's Study.
More than 5,600 gay men in four cities took part in MACS, and 1,242 of them were local men. Another 2,000 volunteered for other Pitt Men's Study research.
Not all have survived to celebrate MACS's 15th anniversary.
Nationwide, 1,685 MACS volunteers have died, 214 of whom were local. An additional 69 men have died who were involved in other aspects of the Pitt study.
As for the survivors, many of them have given blood and answered questions every six months for more than 15 years.
Thanks to their dedication, researchers from the Pitt Men's Study and MACS have helped write the history of AIDS from science's perspective. They learned how the virus spread, discovered ways of measuring the disease's progression and found interventions that help HIV-positive people live longer.
The participants have an AIDS story to tell, too. It's about how the disease changed their community, how they learned to cope with death -- and with life -- and how effective treatments have given them hope.
In 1981, at Presbyterian Hospital, infectious disease specialist Charles Rinaldo saw his first AIDS patient.
"I'd only been here a few years, and I started studying this crazy disease that not too many people wanted to fool with," said Rinaldo, now chairman of infectious diseases at Pitt's Graduate School of Public Health. "It turned out to be my life's work to a large extent."
Rinaldo and Pitt medical student David Lyter set out to gather gay volunteers who would regularly give blood for the research. They worked with organizations like Persad, a mental health organization for sexual minorities, and the Gay and Lesbian Community Center, but they soon discovered that the best place to pick up gay men, so to speak, was in a bar.
To that end, the researchers began an unorthodox collaboration with the Tavern Guild, owners of gay and lesbian night spots. Four guild members, all of them study participants, talked about those times while they sat on the balcony behind New York New York, a club in Shadyside.
Guild treasurer Chuck Honse recalled when Rinaldo met with the owners for the first time at the Pegasus Lounge, Downtown. On the table sat a pitcher of water and several glasses.
"He came in and picked up a glass, filled it up with water and drank out of it," recalled Honse, who now is co-owner of Images, Downtown, and the Holiday Bar in Oakland. "I leaned over to my partner and said, 'I guess we don't have to buy plastic glasses.' "
Owners had been using disposable plates and cups in their establishments, wrongly thinking that this would slow the spread of the disease. They quickly abandoned the practice.
Instead, they hung handwritten posters promoting the study in their clubs, paid their staff to attend AIDS information sessions so that they in turn could educate customers, and let the researchers recruit bar patrons to give blood for the fledgling project.
One night, a popular customer who was terrified of needles walked up to a table of friends holding a cotton ball to his arm, shaming them all into giving blood. The guy later revealed that he hadn't been punctured at all but used the bandage to encourage others to join.
"It was bribery," Honse admitted. "Any way we could."
With this help, Rinaldo gathered 70 men for a local pilot study.
At the same time, officials from the National Institutes of Health announced that they would award four-year grants to sites chosen for the just-started MACS. The cause of AIDS was not yet known, but its deadly threat demanded quick and widespread response.
The Pitt team applied for funds even though Allegheny County had only three AIDS cases at the end of 1982, far fewer than cities such as San Francisco and New York. As it turned out, federal health officials wanted a low-incidence city for comparison.
The NIH was impressed with the Pitt team's early success at finding study volunteers. The researchers continued to make strides, as local bar owners helped them put up tents to recruit at Tavern Guild-sponsored holiday picnics, where more than 3,000 gay men gathered.
In the fall of 1983, the Pitt researchers won a four-year, $4.36 million MACS grant. They would work with other university research teams studying gay men in Baltimore, Los Angeles and Chicago. Then and now, information from all the sites is together for a variety of investigations.
Club-owner involvement remained a unique part of the Pittsburgh project. Tavern Guild members had tried to convince bar and bathhouse owners in other cities to distribute AIDS information and condoms but were rebuffed. A gay Philadelphia bar owner asked Honse why he'd want to chase away business by reminding people about the virus.
Honse told him that "when people die, they don't buy any drinks at all. They're not ever coming back."
The Pitt researchers had to overcome fear of the disease and its stigma to get large numbers of study volunteers. They hired Anthony Silvestre for the six-month job of guiding their recruitment efforts. He has stayed for 15 years as a co-investigator for the project.
"People were afraid if they joined our study, they would get AIDS from our needles," Silvestre said. "They worried that people would see them coming to the building. They worried that mail would be looked at by their postal office person. That if we called them at home, their parents would find out."
Even now, study updates are mailed in plain envelopes, lined to hide the contents. At every visit, participants fill out a form asking if they can be telephoned or contacted through the mail.
Participants were, and some still are, afraid of information leaks because consequences were not pretty. They would be revealed as gay, which for some was a well-kept secret from family and co-workers, and as being at risk for a disease that terrified everyone.
On April 1, 1984, participants could officially enroll in the MACS. But Pitt researchers -- the "vampires" -- had begun recruiting men for the study long before. Many of the original 70 men from the pilot study signed up for the MACS, known locally as Study II, and another 1,100 or so joined as well.
To this day, twice a year, participants give samples of their blood, semen, urine, stool and throat secretions, and have the opportunity to take part in other MACS studies examining behavioral and psychological aspects of HIV infection.
Another 2,000 local men participate in the so-called Study I, which is a screening program. Every six months, they have blood tests for the AIDS virus. They also may choose to take part in other projects in the Pitt Men's Study.
The HIV blood test was approved in 1985, a year after the virus was identified. The earlier work of recruiting study volunteers was going to pay off: The participants' biannual blood samples had been frozen in anticipation of such a test.
The researchers tested the blood and discovered that one out of every five volunteers already had been infected with the virus when they gave the first sample. And now participants, at their request, could learn whether they were infected.
It was not an easy decision to make. According to study member "Andy," 60 (his name, like that of other participants in this story, has been changed at his request), many people didn't want to know the result because there was little that could be done about it.
"It was a difficult thing to face up to, to actually go in there and find out," he said. Nonetheless, he decided that he wanted to know, and was told that he'd already been infected. "They told you the things you shouldn't do. Don't drink, don't smoke, don't do drugs, don't do IVs or unsafe sex. That's about all they had to offer at that point."
The definition of "unsafe sex" was not clear until February 1987, when one of the first MACS research papers (there are now more than 600) was published in the journal Science. Lead investigator and Pitt epidemiologist Larry Kingsley found that HIV was mostly spread in the gay population via anal sex, as had long been suspected.
Back then, "if they stopped having anal sex, 90 percent of all new infections would have been eliminated," Kingsley said. "As it turns out, it is an important sexual practice to many people. It is preferred by many people. Therefore, it's difficult to give up."
For some gay men who grew up and came out during the 1970s, practicing safe sex with condoms and monogamy meant a radical change in lifestyle.
Cristopher Reay, who grew up in the Somerset County hamlet of Windber, was 22 when he took vacations to what he calls gay meccas: Chicago, San Francisco and New York City.
"Hey, my hormones were raging, I'll be the first to admit it," he said. "Looking at all the games everyone else was playing, I wanted to be at the party."
Reay first heard about AIDS after a tryst with a man he met on a street corner in New York.
"Before I left his apartment, he warned me about this disease," Reay recalled. "He said, 'Watch yourself out there.' "
He learned more about AIDS as he frequented Pittsburgh bars in the early '80s, thanks to the efforts of the Pitt Men's Study and the club owners. He signed up for the study in 1984.
It was a time when "gay men could go to a building, plunk down a ten-dollar bill, take off their clothes, put them in a locker and go have all the sexual game-playing that they wanted," Reay said. Condom use varied. He explained that some men already used them regularly, because they didn't want to give their wives a sexually transmitted disease and "blow their cover."
Reay, too, learned he was already HIV-positive when he joined the study. But unlike Andy, "I came home and tap-danced on the back porch. 'I've got it, I've got it!' "
He acknowledged that his reaction was unusual, explaining that in some way it was a relief to not spend his life worrying about becoming infected. Instead, he concentrated on staying healthy and practicing low-risk sex.
"Mike" had been negative upon joining the study, but got the virus a short time later.
"I think I was stupid on some level," he said. "It felt like in the early days, it was either have sex or don't have sex. I know people who gave up sex for five, six years. I know people who still are not having sex. I didn't have that kind of will power."
Mike, 46, hasn't told many of his friends and co-workers that he's HIV-positive, although he is "totally out" as gay. He said his sense of shame may be rooted in having a disease that is spread through sex.
According to co-investigator Silvestre, many of the study's HIV-positive men feel guilty about becoming infected because they had received prevention education.
"I know people who moved out of town because they felt so embarrassed," he said. "The [lesson] is this: Knowledge does not create a behavior change. If that happened, we could close the School of Public Health."
Silvestre conducted a study to see under what circumstances people became infected even while they were well-educated about the virus. He found that some gambled and had sex thinking the new partner was uninfected. A second group had mental health problems, such as depression, that made them behave recklessly. The third group became infected when their judgment was impaired by alcohol or drugs.
The researchers tried to help HIV-positive men cope with feelings of fear and guilt in the aftermath of giving them their test results. They suggested counselors and physicians and provided information about insurance and legal issues.
They also had to be ready to discuss funeral arrangements and ask permission to do a post-mortem exam. The Pitt team still conducts autopsies and keeps tissue samples of MACS participants who die.
Many HIV-positive men made plans for their funerals. Reay, now 43, decided that his ashes will be put in a dark blue, stiff-sided handbag, circa the 1940s. The unusual receptacle will sit on his living-room mantle while his friends and family hold a wake. Then his ashes will be scattered.
More than once, men on the verge of death have called Silvestre to make clear their wishes that their remains be examined for research.
Said Silvestre: "What I took comfort in as I dealt with these dying men was that for them, it was a comfort to be in the study. They were going to make sense of their short lives. They were not going to die without leaving a mark."
But not all the men infected with HIV are at death's door.
By the late '80s, researchers began to note that a small portion of men weren't developing AIDS as soon as expected, if at all. And about 5 percent (10 people) in the Men's Study who were HIV-positive when the study began still have not become ill. They are known as long-term nonprogressers.
These people provide clues about the role of genetics and immunology in disease progression, which can then point to new treatments and prevention strategies.
"William" found out he was HIV-positive after blood he donated was rejected. The blood bank's letter was sent to him at his parents' address and his mother read it. He has been banished, as he puts it, from the family since 1984.
He is still healthy. William, now 33, joined the Pitt study soon after he learned he was positive, but he dropped out after 18 months. He felt as if he were giving the virus power by recognizing its existence, he explained.
"After about eight years, I realized I wasn't dead yet. I wasn't sick. Nothing was wrong with me." He rejoined the study in hopes that the researchers could "apply that information, and see if they could do something more for other people."
Long-term survivors like William often have mixed feelings about their good fortune. "It's freaky. It's like a cloud hanging there. You just never know when it's going to rain."
The other long-term study volunteers have remained free of the virus.
Tom Spanadda of Squirrel Hill was the 33rd person to join the Pitt pilot study in 1982, and every six months since, his blood has tested negative. He was one of the founders of the Pittsburgh AIDS Task Force, an agency that was conceived in 1985 by the study's advisory board because the researchers couldn't keep up with requests for assistance from the community.
"In those early days of the task force, when people were coming and asking for answers and we were watching them die, it was hard to justify being part of a community when you're not dying," said Spanadda, now 39. But "you're dying emotionally; you're dying psychologically. You're helpless.
"We needed support for the living as well as for the people who passed before us."
Sadness lingers in those who have lost friends to AIDS. Mike recalled the close friends he had when he came out as gay. Two years ago, he became the last living member of that social group.
"There's nobody in my life right now who knows about that [time]," he said softly, looking away. "Part of my history is gone. Just thinking about it is starting to bother me."
During the late '80s, there was no effective treatment for AIDS, although much had been learned about the progression from HIV infection to disease.
The virus does damage as it multiplies and infects a growing number of immune system T-cells, which normally destroy harmful bacteria and viruses. The HIV-positive person is said to have AIDS when those cells, called CD4s, fall below a threshold level and leave him at risk for infections.
The MACS set standards for the lab measurement of those immunological markers. In 1989, it found that when the CD4 count dropped to a certain level, a daily dose of antibiotics could prevent the patient from getting a deadly pneumonia. The researchers found in 1993 that the strategy delayed the onset of AIDS by six to nine months.
In the early '90s, drugs called protease inhibitors were developed, and three-drug cocktails drove down HIV until it was no longer detectable in the blood.
"The hope came when that happened," said Mike, who has been HIV-positive for more than a decade. "Now I really believe if I can take these drugs and I can hang on for another five years, then there's a good possibility that there may be a cure somewhere along the way."
Meanwhile, Mike and many other HIV-infected people take medications according to federal treatment guidelines that spun out of data from the Pitt Men's Study and MACS.
Dr. John Mellors, director of the University of Pittsburgh Medical Center's HIV/AIDS program, tested the idea that viral levels in the blood reflect disease progression. At the time, treatment decisions were based primarily on T-cell counts. But Mellors focused on the virus itself.
He turned to the blood samples collected through the years from 180 study participants. He found that the viral level was high in people who developed AIDS, but was extremely low in the long-term nonprogressors who had never become sick.
His Pitt Men's Study findings were published in Science in 1996 and led to a review of stored blood samples from more than 1,600 MACS men. The results were clear, and now viral load as well as T-cell count guide life-saving drug regimens.
Tavern owner Honse's memories of the introduction of triple-drug therapy are bittersweet. There were desperately ill people who took the drugs and miraculously became much healthier. And then there were those who had already died, some scant weeks before the drugs were available.
But the medicines have not cured the infection. Some people don't respond to them, and there is always the possibility that drug resistance will eventually negate its effectiveness.
There are also new problems.
Cris Reay, who has been taking various pills for eight years, now has a side effect called lipodystrophy. The fat from his arms, legs and face migrated into his belly, giving it a pregnant look nicknamed Crix Belly or Protease Paunch, after the drugs.
Another concern is that young people growing up in the age of effective HIV treatment will forget or ignore the prevention messages of the past 15 years. The infection that was once called GRID, for gay-related immune deficiency, is proliferating in African-Americans and intravenous drug users.
Researchers and participants agree that despite the epidemic's shift,, ongoing study of a large number of gay men is important.
Scientists from all over the world have used MACS samples to make important discoveries, such as identifying a strain of herpes virus in 1996 linked to a cancer, Kaposi's sarcoma, that is common in AIDS patients. The specimens also showed that some people have a gene-based resistance to HIV infection. Samples have been used for research in virology, immunology, cancer and infectious diseases.
MACS itself has a major role to play. A new project will answer questions about the fat redistribution syndrome, and ongoing work examines genetic factors that affect HIV disease.
And participants still are asked to be at the forefront of research. AIDSvax, the first HIV vaccine to enter the last stages of testing, is being offered to the HIV-negative men who are part of the local study.
In 1995, the NIH announced budget cuts and reduced the number of MACS participants at all the sites. The Pitt team shifted ex-MACS men into local studies. They also began working with the Allegheny County Health Department to continue taking volunteers from its HIV-screening program in an effort to include everyone who wants to be part of a study. Last month, the Men's Study received a grant of $6.9 million from the NIH to continue its research.
The efforts of local scientists and participants over the past decade and a half have earned them the respect of the AIDS research community.
"Pittsburgh has been right there at the center of MACS, providing leadership and active participation," said Dr. Sten Vermund of the University of Alabama in Birmingham. He worked at the NIH from 1988 to 1994, watching over the study, and still collaborates with MACS researchers. "It has not had as big an epidemic as Baltimore or Los Angeles or Chicago. Yet it has been every bit the contributor."
The number of AIDS cases here has remained low. According to the Federal Centers for Disease Control and Prevention, between July 1997 and July 1998, there were more than 1,000 cases in Baltimore. In Pittsburgh, there were 126.
Perhaps the answer for that also can be found in the local bars.
As Honse put it, "The study raised the awareness level. Just being involved in the study and going every six months and keeping [HIV] prominent in your mind, there was a tendency to lean to safe sex.
"I fear to think how many other people we would have lost if we hadn't had the study."
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