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Pioneers who Began as Volunteers in the AIDS Epidemic by Larry Mass, MD

6.2.2011

Pioneers who Began as Volunteers in the AIDS Epidemic:  Larry Kramer, Judy Peabody, Rodger McFarlane and Eddie's Buddy


by Lawrence D. Mass, MD
One of GMHC's Six Founders

In the 30th year of the epidemic, AIDS remains this great global scourge that has yet to reach its peak.  In fact, it is now, alongside the great influenza epidemic of 1918 and the Black Death of Europe, one of the three greatest epidemics in recorded history. Thirty-five million people have died. Tens of millions remain infected, with rates soaring in various cohorts around the world, Here in America, people of color, women, urban teens and gay men remain disproportionately affected and underserved as funding dries up and resources dwindle. Meanwhile, even as so many lives have been saved and normalized, too many still die and remain gravely ill from AIDS.  HIV prevention leadership remains invisible and prevention failure has become entrenched.

I turn 65 next week and my memory is no longer so sharp, but I do remember those early days when GMHC was entirely about its volunteers and their work. I remember the endless stuffing of envelopes with smudges from my fingers, and the dryness of my mouth from so much licking!

Some of the most vivid images of it all are captured in Larry Kramer's play, The Normal Heart, currently enjoying a sensational revival on Broadway. Larry Kramer, of course, was the principal and guiding force behind the establishment of Gay Men's Health Crisis (GMHC). He will always deserve a lion's share of credit for GMHC's founding, organization and for the brightness of its star. 

This play, written before HIV was even identified, before the cause of AIDS was known with certainty, recalls as nothing else does the  dread, pain, confusion, anger, suffering, courage and humanity of our early gay men's health crisis. Whatever the past conflicts between Larry and GMHC, and however recreated some of its incidents, characters and history, this play is a must see for every gay man, for every person having anything to do with AIDS, for every person with a heart.

I want to mention my own involvement because the work of GMHC became all about people doing what they could in the absence of certainty as to what was exactly needed. As a physician and writer, I wrote the first, albeit woefully inadequate fliers about risks and precautions, one of which Dr. Brookner throws to the floor as worthless in The Normal Heart. I helped develop GMHC's first newsletters. Over time, I formulated a more incisive booklet, Medical Answers About AIDS, which GMHC published over the next 10 years in four revisions. It never relinquished my early certainty that we must not become sex-negative. And each edition ended with a concept that I'm especially proud of in light of today's marriage equality struggles: a plea for the "cultural sanctioning of same sex relationships as an essential consideration in the long range preventive medicine of HIV/AIDS." GMHC gave me, as it did so many others, the opportunity to make a contribution.

I also want to recall a few images of early volunteerism that came most strongly to me.

Judy Peabody was a key figure in getting the whole buddy system off the ground. This system consisted of trained volunteers who provided at-home support to people living and too often dying of AIDS.  I got an insider's view of Judy, who died last year, via her friendship with my close friend, Vito Russo, who died in 1990. Judy was this high society lady, very aristocratically appointed and well-spoken. When I first met her, it was difficult to take my eye off the large emerald and diamond broach she was wearing. I thought it both incongruous and brave of her to get involved in something as politically volatile, socially declassee and scrappy as AIDS was in those days. 

But what really amazed me was the depth of her commitment. Her volunteerism wasn't just about guest lists or donations. It was an all-out, sleeves-rolled-up, tireless mission. I saw how she was constantly in touch with Vito, always getting personal feedback about every aspect of our crisis and the people in it. I remember thinking: Gee, even if I had her advantages, would I be able to do half the job she was doing?  What I took from the example of Judy Peabody is that this wasn't about one's status, one's knowledge, one's experience. It was about how much one cared.

The next image is of Rodger McFarlane, GMHC's first paid Executive Director. Rodger invented a lot of the volunteerism we know today. He took it as far as it seemed it could possibly go, and then way beyond that! Of all our losses, there is none greater or more painful than the death of Rodger in 2009. As stated in the Wikipedia entry on him, "McFarlane walked into the offices of Gay Men's Health Crisis, offering to serve as a volunteer. He began a crisis counseling hotline that originated from his own home telephone, which ultimately became one of the organization's most effective tools for sharing information about AIDS. Shortly thereafter, he was named as the first paid executive director of GMHC, helping create a more formal structure for the nascent organization, which had no funding or offices when he took on the role."

As summarized by Larry Kramer, who became his closest friend, GMHC is essentially what Rodger McFarlane started: crisis counseling, legal aid, volunteers, the buddy system, social workers as part of an organization that now serves more than 11,000 people affected by HIV and AIDS. Rodger went on to become a founding member of the New York branch of ACT UP (AIDS Coalition to Unleash Power), as well as a co-founder of Broadway Cares: Equity Fights AIDS. In his last major role of public service, he was Executive Director of the Gill Foundation.

The final image comes  from Victor Bumbalo's 1990 play, Adam and The Experts, an AIDS play and exemplar of gay theater. It features Eddie, a gay man dying of AIDS. Extremely depressed, to the point of being speechless, he is visited by a GMHC buddy who is on his first assignment. The buddy is very insecure about what he's doing. When he tries to introduce himself and offer help, he becomes bumblingly inarticulate and breaks down in a sobbing apology for being so incompetent. Paradoxically, this inspires Eddie, the guy who's dying of AIDS, to break out of his depression-shell to comfort his GMHC buddy!  Their bond is forged.  Moral of this story: The issue isn't so much about getting it exactly right, or even getting it wrong. It's about genuinely caring.

So as we reflect today on the 30th year of the epidemic, let us remember these heroes of volunteerism: Larry Kramer, Judy Peabody, Rodger McFarlane, and  all the GMHC buddies and volunteers whose genuine caring and efforts have touched the lives of persons with AIDS, and brought inspiration, hope, spirit and soul to us all. Eddie's buddy in Adam and the Experts was trying to be a care partner before antiviral therapy became available, when the prognosis for AIDS was still universally fatal. Since then, we've come a long way, thanks largely to the volunteers, activists, and the next organization Larry Kramer went on to found and lead: ACT UP.

We still may not yet have a cure or preventive vaccine for AIDS, but on the basis of what has already been achieved, these otherwise impossible dreams are sure to come true. All it will take is that decision to take the first step to join in, to volunteer, to care.

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About GMHC:  GMHC is a not-for-profit, volunteer-supported, and community-based organization committed to national leadership in the fight against AIDS. We provide prevention and care services to men, women, and families that are living with, or affected by, HIV/AIDS in New York City. We advocate for scientific, evidence-based public health solutions for hundreds of thousands worldwide.  Our mission:  GMHC fights to end the AIDS epidemic and uplift the lives of all affected.