Unsung heroes: Men, decades-long study aid HIV/AIDS research
PITTSBURGH (AP) — Somber tones from the Reuter Opus organ filled Heinz Memorial Chapel on a dark December night as a small crowd filtered into the towering neo-Gothic church on the University of Pittsburgh campus to mark World AIDS Day.
As they have for more than three decades, the Pitt Men’s Study leaders gathered with about four dozen men and women. They remembered those who have died and gave thanks for the 1,743 men who have participated in the nation’s longest-running HIV/AIDS research project.
Charles Rinaldo, a Ph.D. scientist who has led the effort since the virus surfaced here in 1981, walked solemnly down the center aisle with a group of clergy.
“So here we are again to honor our participants,” the soft-spoken Rinaldo said, welcoming the sparse group. “For 35 years now, you have supported our study for HIV/AIDS. … We can’t thank you enough. Without you, there is no study.”
Every six months, year after year, participants have trekked to Oakland to offer blood and bodily fluids. Their alms have become the foundation of hundreds of research projects.
The Pitt study, conducted in the halls of the university where Jonas Salk developed the world’s first polio vaccine, began before the affliction that has killed an estimated 32 million people worldwide even had a name: human immunodeficiency virus. Or simply, HIV.
Neither the virus nor its final, deadly stage — acquired immunodeficiency syndrome, or AIDS — dominates the news and national fears as they did decades ago. Yet around the world, about 38 million people remain infected. Many are living longer lives thanks to lifesaving, though expensive, medical treatments. But there is no cure — yet.
Worldwide, an estimated 1.7 million people became infected with HIV last year. Another 770,000 died from AIDS-related illnesses.
In the United States, just more than 1 million people are believed to be living with HIV. Although the number of new infections has declined dramatically, nearly 40,000 in the U.S. still contract HIV every year. And about 16,000 people died from AIDS in the United States in 2016.
Because of that, work on the Pitt Men’s Study continues.
Today, the University of Pittsburgh is among four centers nationwide in the ongoing Multi-Center AIDS Cohort Study, or MACs. The federally funded study was recently extended through 2026. To date, the study has produced more than 1,700 scientific papers that have advanced the understanding and treatment of HIV/AIDS.
Rinaldo is chairman and professor of infectious diseases and microbiology in Pitt’s Graduate School of Public Health and professor of pathology in its medical school. He came to Pitt from Boston in 1978 as a researcher focusing on cytomegalovirus, or CMV, a common virus that can be deadly to those with suppressed immune systems.
In 1981, a young man came to Pittsburgh’s Presbyterian Hospital with an array of puzzling conditions, including CMV and a rare pneumonia. A call went out for Rinaldo.
“We knew something was different, that this was unlikely to be, ‘This is just an interesting case.’ This was something else,” Rinaldo said.
With that, he joined a small cadre of physicians and scientists working to understand a deadly new ailment that seemed to target gay men.
The U.S. Centers for Disease Control and Prevention reported the alarming infection in its weekly bulletin on June 5, 1981. The federal agency cited five papers. Two were Rinaldo’s research.
“The thought was this might be CMV that had somehow mutated,” Rinaldo said. “I knew right away that this was not CMV and there was likely something else going on. It turned out to be a totally different virus.”
The infection and the growing fear among gay men caught the attention of David Lyter, a Pitt medical student who had recently come out as gay. He joined Rinaldo and helped recruit gay men for a pilot study, of which he eventually became medical director.
“We couldn’t have done it without David Lyter,” Rinaldo said.
They gained the trust of gay bar owners who were active in the nascent gay civil rights movement, gaining access to bars such as Pegasus and Images, once mainstays in Pittsburgh’s gay scene on Liberty Avenue, Downtown.
The owners of the Holiday Bar, a popular gay venue that operated in Oakland for 40 years, set the pace for others to join the effort. They invited researchers from the Pitt Men’s Study to set up in the basement of the Forbes Avenue establishment. Free beer was offered to customers who filled out questionnaires and allowed a phlebotomist to take blood samples.
That kind of buy-in was critical for the study’s success — and might have been one of the more unusual situations across the country, said Anthony Silvestre, a former co-investigator for the Pitt Men’s Study who has since retired to Vermont.
“In many, many cities, (gay) bar owners and community leaders stayed away from the issue. It was very unusual,” Silvestre told the Tribune-Review in 2007, as Holiday Bar prepared to close for good.
Lyter, who now practices in Tampa, said they would eventually travel to bars throughout Western Pennsylvania, West Virginia and Ohio on weekends and evenings to recruit participants.
Rinaldo worked hard to gain the trust of the gay community, Lyter said. He learned about the scientist’s interest when Rinaldo did a presentation at the Gay Community Center in Oakland. Lyter contacted him and offered to help.
“I and many other members of the clinical team were gay. One of the drawbacks we faced was it wasn’t typical for the gay community to be recruited into any study, and people were worried about being mistreated. We had to convince them their information wouldn’t be handed over to the government or the insurance companies,” Lyter said.
He said bar owners and religious groups such as DignityUSA and the Metropolitan Community Church, two groups that served the gay and lesbian community and supported the effort, were critical to the team’s success in recruiting the volunteers.
Participant confidentiality remains strict and is observed to this day.
At the time the study was gathering samples in the early 1980s, scientists were operating in the dark. They did not know what was causing the disease and had no tests to identify it and no effective treatment.
In 1982, when the national focus was on stories out of San Francisco and New York, the Pitt team was quietly gaining traction.
Ultimately, they recruited about 70 volunteers. Their data and blood samples would become a foundation to many developments.
The men who volunteered for the study are the real unsung heroes of this saga, Rinaldo said. Some died before treatments were developed. Today, others are aging with HIV thanks to developments that grew out of their participation.
In the early 1980s, participating in the study was an act of courage. The Pennsylvania Supreme Court had only recently overturned anti-sodomy laws, and prejudice against the gay community was running high as fear of the new disease spread.
“These men, a lot of them hadn’t come out. Their families didn’t know about them. They would find out when they were in the hospital with an illness and, ‘Oh, by the way, I’m gay,’ ” Rinaldo said. “It was a crazy time for them, and we were just trying to get them to enroll in our study and give us blood. And they’d ask us, ‘What can we do?’ And all we could tell them was to eat well and exercise — what you tell anyone. That was pretty much all we could do.”
Intravenous drug users and another new group — hemophiliacs — were turning up with the mysterious illness by 1983.
Thousands suffering from hemophilia, a rare genetic disorder that impedes normal blood clotting, would die before scientists realized that they were contracting the infection through HIV-contaminated infusions of blood-clotting treatments.
It was clear by then that the disease was transmitted through blood.
The plague years
Growing evidence suggested it was impossible to contract HIV/AIDS through casual contact, but that did little to assuage public fear.
People were dying.
Rodney Dunlap of West Franklin remembers that era vividly.
Now 61, he was diagnosed with HIV in 1990. He has suffered a stroke, heart attack and kidney cancer in recent years. In the early 1980s, he was part of a community of young men who enjoyed the vibrant nightlife in Pittsburgh’s gay bars before AIDS began to claim life after life.
Today, he lives in the Armstrong County home his parents left him. He speaks openly about his experience because he believes that is the only way to battle the stigma many still attach to the infection that has cost him dearly.
Dunlap said he’s in good health today. But he put his head in his hands as he recalled the early days of the epidemic.
“I lost over 50 friends in one year,” he said.
“I lost my first partner, David, in 1987. He was really talented. He was a designer for ‘Saturday Night Live’ before he returned to Pittsburgh. He was so sick. He was just 25. I stopped in the hospital to see him every night after work for two weeks. I felt so bad for him. I couldn’t let him be by himself. He died of pneumonia in Shadyside Hospital.”
By that time, the medical community knew that HIV, the infection that can lead to full-blown AIDS, was caused by a retrovirus. Dr. Robert Gallo and his colleagues at the National Cancer Institute verified that in 1984. They knew the virus could be transmitted through sex or through blood or blood products. And they had a blood test that could verify the presence of HIV antibodies in the absence of full-blown AIDS.
That development led scientists to a new discovery. Testing long-frozen blood samples, they learned that HIV had emerged in 1959. It was there in a sample taken that year from a man in the Belgian Congo who had presented with a puzzling illness.
Back at Pitt, when the blood test became available, Lyter said the Men’s Study team went to the freezer, pulled out all of those early samples and began to test them.
“One of my biggest jobs was to provide results to people. The biggest emotional reaction I got was from the ‘worried well,’ people who had given a sample two or three years ago, worrying they were infected when they were not. I had more guys crying out of joy in my office than those who were infected. Most of (those infected) were experiencing symptoms by then and knew they were infected,” he said.
Two years later in 1987, they even had the first antiretroviral treatment, known as AZT.
“The early drugs were highly toxic and they didn’t work very well, but they did extend life,” Rinaldo said.
By 1984, the federal government agreed to underwrite research. Pitt, with hundreds of volunteers already participating in local research, was approved to become part of the Multi-Center AIDS Cohort Study that included centers in Baltimore, Los Angeles and Chicago.
By 1988, the public health community realized that education about the behaviors that could lead to infection — such as unprotected anal sex and sharing needles among intravenous drug users — could help prevent infection.
Linda Rose Frank, a Ph.D. advanced practice nurse at Pitt, answered the call. She has directed the MidAtlantic AIDS Education and Training Center since that time, coordinating education efforts to more than 250,000 educators across a region that includes Pennsylvania, Virginia, West Virginia, Maryland and Delaware.
Things have changed dramatically over 30 years.
A triple drug cocktail, introduced in 1996, was a tipping point, she said. Suddenly, HIV became a chronic infection rather than a death sentence.
“Many people had given up on their lives,” Frank recalled. “I remember talking to people with HIV who didn’t think they’d ever get to go to college and finish a degree because they didn’t think they’d live long enough. And once we started to give triple combination therapy, it changed overnight. People began to talk about living with HIV, not dying.”
In a mere 15 years, science had tackled the mysterious new plague and found, if not a cure, at least the keys to treating and controlling it.
“It will go down historically as a miracle of science — the epidemic and how it was controlled,” said Rinaldo, wringing his hands. “It doesn’t help the men who died or went through that suffering. But with their help and their input, especially with a study like ours that depended totally upon their volunteerism, we were able to advance the science to an incredible length. …
“So to have this medicine for HIV was a huge breakthrough, incredible. And not just one drug, but a whole host of drugs.”
‘Life and death’
While the Pitt study has enrolled 1,743 men, it also has recorded 521 deaths. Some died of AIDS before the science had advanced effective treatments. Some died of other causes. Some now are dying of age-related ailments, and scientists are seeking to determine whether the virus has accelerated such processes.
Among those tackling the vexing questions surrounding HIV is Marc C.E. Wagner. The Swissvale man signed up for the Pitt Men’s Study in 1984 at age 22 and received word that he had HIV shortly thereafter.
Now 57, Wagner is a medical technician. He is among the longstanding participants who return to the Pitt Men’s Study lab every six months.
Meanwhile, he has worked in offices and labs at Pitt, Carnegie Mellon University and the University of Pennsylvania on projects varying from breast cancer to Alzheimer’s disease.
But HIV is his passion. He’s made it his life’s work to study and understand the virus, while working on unrelated projects.
Although his viral load is undetectable, he knows HIV lurks in his cells and could wreak havoc were he to stop taking the drugs that control it.
“Finding a cure is a matter of life and death,” he said.
Though he has no academic degrees, Wagner has produced a peer-reviewed scientific article on HIV research. The AIDS Cure Research Collaborative, a nonprofit he founded, recently won its first research grant from the Pittsburgh Foundation.
Wagner, who is on the Community Advisory Board of the Pitt Men’s Study, attended the World AIDS Day service at Heinz Memorial Chapel.
The slender researcher brought a section of the AIDS quilt he received when its original owner left the area and wanted to find someone who would care for the carefully curated artifact.
Names embroidered on yellowing quilt squares — Bobbie, Jimmy, Noel, Steve, John and Clarence — recall those who died of AIDS.
At the height of the epidemic, people crowded pews inside Heinz Memorial Chapel for the annual service that marks World AIDS Day. This year, the handful that attended were mainly older men and women who remember a different time.
Ushers passed out pens and brightly colored strips of paper.
In a ritual repeated year after year, those who came scribbled the names of loved ones who died from AIDS and walked forward. In front of the altar, some wept silently as they pressed the names into the “Circle of Love” — a large circular poster. Rinaldo walked to the front and added a name to the collection.
“We are still searching for a true vaccine to prevent HIV,” Rinaldo said to the small group. “But we are dedicated to study for as long as it takes to reach our goals.”
Information from: Tribune-Review, http://triblive.com