Prizm News / December 1, 2017 / By Bob Vitale
Ronald Johnson, Teresa Long and Michael Para have spent their careers caring, helping and advocating for people with HIV/AIDS.
By Bob Vitale
“Sometimes you just don’t want to talk about it,” Ronald Johnson says of the early years. “It’s painful, and there’s the realization that many younger gay men today, thank God, just don’t have that experience. It’s like old soldiers talking about ancient war stories. It gets tired very quickly.”
But the early days of HIV/AIDS must be remembered. It was a time when diagnosis meant certain death, and death took away so many. It was a time when a new level of intolerance toward the LGBT community was matched by a new level of activism in response.
This year marks the 30th observation of World AIDS Day, a time to talk about the disease, remember its victims and pledge our support to those living with HIV.
This year, we also honor three people who have been part of the fight since the beginning.
‘THEY HAD THESE CASES’
Dr. Michael Para was working as a viral researcher in Chicago when he got a call in April of 1981 from a friend at the federal Centers for Disease Control.
“He asked me whether any virus…that I had been working on would cause a marked immunosuppression. They had started seeing people in New York and L.A. and San Francisco with unusual infections that you typically only see in people whose immune systems are notably injured.”
The even stranger thing: The cases all involved gay men.
It was the first time Para heard of what some called the gay cancer. The gay plague. Gay-Related Immune Deficiency.
HIV and AIDS.
Para has researched the disease and the virus that causes it since he got that call. He left Chicago a few months later for Ohio State University in Columbus, where his background as a virologist and work with patients with compromised immune systems quickly made him an expert on AIDS and HIV.
Para estimates he currently follows more than 600 patients. He also serves as medical director for Equitas Health, which publishes Prizm.
He saw his first AIDS patient in 1983.
“It was a guy who came in really sick with Pneumocystis pneumonia. I remember seeing him in the intensive care unit, and he died not too long after that.”
AIDS wouldn’t spare Ohio, and people with the disease were sent to Para. From 1984 to 1985, according to the Ohio Department of Health, the number of people newly diagnosed just about quadrupled, from more than 100 to well over 400. By 1986, more than 100 Ohioans a year were dying.
“Mike Para has been providing outstanding care for patients with HIV/AIDS since the beginning of the epidemic. His influence on how we have responded as a community to HIV/AIDS in Central Ohio cannot be overstated.”
– Dr. Chad Braun,
Chief Medical Officer,
‘THEY WERE COMING IN VERY SICK’
“I can actually see the imprint of the title of that article,” Dr. Teresa Long recalls. She first learned of AIDS from the CDC’s June 5, 1981, Morbidity and Mortality Weekly Report, a compilation of public health issues facing the country.
Long was a resident at San Francisco General Hospital. She later worked at the San Francisco Department of Public Health and came to Columbus in 1986 to help establish the city’s testing and prevention programs. She will retire this month as Columbus’ health commissioner.
Back in 1981, San Francisco General felt like ground zero.
“They were coming in very sick. Spots. Spots on faces. Lesions. Pulmonary problems. There was, among medical professionals and everyone, a fear.”
Long, like Para, says there were staff who transferred away from the patients with the disease that was new and unknown and frightening.
“But you know,” she says, “I don’t remember…”
Long, like Para, doesn’t remember wanting to leave.
“When I think of the allies that help lift our community to achieve equity, I see no better example than Dr. Long. She understands that whenever anyone group does not share in the opportunities to achieve good health, the community in general cannot achieve good health.”
Former Communications Director,
Columbus Public Health
‘AFRAID OF BEING GAY’
Ronald Johnson jokes that he was probably one of only three people reading The New York Times over the Fourth of July weekend in 1981. “If I had gone to Fire Island, there would have been only two.”
The Times published its first story—”Rare Cancer Seen in 41 Homosexuals”—on July 3, 1981.
The men ranged in age from 26 to 51. Most reported “frequent sexual encounters with different partners.” One doctor reported “no apparent danger to non-homosexuals.”
Johnson remembers thinking: “This is weird.’”
“What was transmitted still wasn’t known,” Johnson says. “So just the act of homosexual activity was scary. People just became afraid of being gay.”
Johnson volunteered for New York’s Gay Men’s Health Crisis, the first of many community groups organized around the country. He led the Minority Task Force on AIDS. He was New York City’s first AIDS policy coordinator, and now he’s about to retire as vice president of policy and advocacy for AIDS United.
He has seen the devastating effect of AIDS—he lost a partner to the disease and estimates that 80 percent of coworkers from the task force are dead—but he also speaks proudly of the community’s response.
“Advocacy has been a part of the response to HIV since Day One,” he says. “It had to be. There were literally no services. The government was ignoring us. We had to demand things. We not only had to create things for ourselves, we had to demand things.”
“Ronald was there in the beginning of the AIDS crisis, and he has worked at the local and national levels. In the trenches and from the 30,000-feet level, he has helped craft our nation’s response to HIV.”
– Bill Hardy,
President and CEO,
‘WE WERE OUR PROVIDERS’
Along with fear came stigma. There were allies such as Para and Long and others, but the community learned quickly that it was on its own.
“We recognized in those days that we were our providers,” Johnson says. “There were people who helped despite the fear.”
Buddy programs provided AIDS patients with everything from rides to the doctor to end-of-life care. Lesbians became some of the most dedicated care-givers and advocates for gay men.
And the care was hard, Long says. “It was messy. Literally messy.”
People also mobilized politically.
Until AIDS, Johnson says, many gay men—particularly white gay men, who were AIDS’ earliest victims—lived closeted but comfortable lives. AIDS made their sexual orientation clear and discrimination commonplace.
But the formerly privileged knew a thing or two about organizing. As an early fundraiser for the Gay Men’s Health Crisis, supporters rented out Madison Square Garden for a performance of the Ringling Bros. and Barnum & Bailey Circus.
“These are men who said, ‘Oh no, no, no. I know the system,’” Johnson says. “Not only were they not used to being shunned, they knew how to respond. They said, ‘OK, we’ll organize ourselves.’”
In San Francisco, Long recalls, activists who chained themselves to buildings also worked with officials behind the scenes. When she came to Columbus, Long set up an advisory group of LGBT activists.
“They were in your face sometime—in my face—but they were terrific at saying, ‘We can do this,’ or, ‘We can help,’ or, ‘Here’s who you need to talk to.’”
‘THERE IS HOPE’
“You’ve been in the business a long time,” Long told Johnson when they met for the first time in early November. “Me too.”
The retiring vice president at AIDS United came to Ohio to be honored by the board of Equitas Health.
“None of us thought we were going to be in this for the long term,” Johnson says.
But the three veterans are more hopeful than ever about ending the epidemic.
Since 2010, new HIV diagnoses have fallen among white gay and bisexual men, and the number has stabilized among black gay and bi men. PrEP, the use of HIV medication to prevent transmission of the virus, promises even greater results.
While stigma still exists, Para says HIV now “is easier to treat than high blood pressure.” But therein lies a new frustration: 51 percent of people with HIV are not being treated.
Johnson calls today’s prevention and treatment advances a “functional cure.” He was diagnosed with HIV in 1988 and didn’t think he would live to see his 50th birthday. He’s now 69, married and planning his retirement.
“There is hope,” he says.