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The Man Who Still Knows Too Much

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Fifteen years ago this month, I profiled Dr. Joseph Sonnabend for the cover of POZ.  Check it out for a good perspective on some of the epidemic's earliest and most important history.

In those early years, I was insistent that our cover almost always be a profile of someone with HIV.  Joe was only the second person on the cover who wasn't known to be HIV positive; the first was Elizabeth Taylor.

I wish every person with HIV enjoyed the benefit of Joe's care.  I've never met a former patient of his who view him in anything less than heroic terms. 

He's retired and living in London now, composing music and caring for an ill sister.  Occasionally he blogs for POZ, most recently with a reflection on the 30th anniversary of the introduction of "safer sex."

One cannot adequately understand the epidemic without understanding the work and role of pioneering clinicians, researchers and advocates like Joseph Sonnabend (he was all three), many of whom remain inadequately recognized for the lives they saved.

If we had paid attention to what they had to say in the early years, I have no doubt but that the epidemic would be vastly smaller today. We, as a community, are practiced at identifying all sorts of people and institutions--from Ronald Reagan and Ed Koch to government bureaucrats, the pharmaceutical industry, politicians and religious zealots, etc.--whose actions, or inaction, in those early years so dramatically accelerated the epidemic.

We haven't been quite as diligent in reviewing the leadership of those who were our friends and allies and recognizing that we made many mistakes.  The purpose isn't to blame, but to understand.  What could the LGBT leadership--which was the de facto AIDS leadership--have done differently in the early years?  What do we know now was a mistake?  What do these things mean for future epidemics or for addressing the HIV epidemic now?



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Comments on Sean Strub's blog entry "The Man Who Still Knows Too Much"

The question assumes that "LBT" were integrated into the "G" leadership.
What could the "G" leadership have done differently?
It could have paid attention to the "L"s and "T"s of color who were already dying. The "G" leadership could have looked past the boundaries of Dupont Circle in Washington, DC to Anacostia where people had already died. They might have visited Lorton Reformatory -- or any other prison -- to see who was sick and dying.

What do we know now was a mistake?
It was a mistake to presume that "identity" was a determinant for seroconversion.

What do these things mean for future epidemics or for addressing the HIV epidemic now?
"Racial" science is still with us. Health care is a right not a privilege.

Why do we forget all the great people, like me who fought for gay rignts, worked on gay pride Boston,back when it was, a good chance you could be hurt, Worked with early HIV researches. Was in tons of studies for yrs. went public about having HIV. Was in the first Nova special about AIDS. Watched over 200 gay men die. Faced discrimination in hospitals, and other places. Fought for all the people who were HIV poz, so they could get support services. Still active online to reduce the 56,000 new infections of HIV in the USA. Sick in 1979 diagnosed by co-culture, by DR Goopman in 1983, Fought to survive. Fought for early treatment. When I DIE, if nobody cares all the history, I have seen goes away. PEOPLE like me should have their life story recorded, cause THE WORLD is forgetting. It is a KIND of GENOCIDE of HISTORY. Young gay men do not know what happened. IF we forget our HISTORY, we doom ourselves to have it happen again. Meningitis, has killed a few gay men, why are we waiting, for more to die? There is a vaccine, We need to vaccinate 10's of thousands of gay men maybe 100'd of thousands gay men. DO NOT LET HISTORY REPEATE.

Mindy,

You're correct and I used the LGBT nomenclature inaccurately. I meant to refer to the institutional gay and lesbian political leadership at the time (there was lesbian leadership involved in the community's response to the epidemic from the beginning).

Sean


I volunteered for Dr. Sonnabend at the Community Research Initiative on AIDS in NYC, along with Michael Callen. This man gave us hope in the midst of hell.
Through that work with him, I felt experienced enough to start, with my physician, The Philadelphia Center in Shreveport, LA.
He was certainly a pioneer!

"What do we now know was a mistake?"

That we failed to recognize that our heterosexual enemies at the time were correct about our sexual activities but for the wrong reason. This was not an ethical reason but a medical one.

That one of the primary tenets of the gay-liberation movement of the 1970s--have as much sex as you want, where you want, when you want, how you want--turned out to kill us, because of a then-unknown virus.

That the president of GMHC in 1982, Paul Popham, told me, when I was attempting to edit the first newsletter from GMHC: "We can't tell people how to have sex."

That Dr. Sonnabend, Michael Callen, Richard Berkowitz, and others who were advocating for safer-sex practices were ostracized, ridiculed, and condemned by the gay community.

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This page contains a single entry by Sean Strub published on July 16, 2013 10:44 AM.

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