Urgent Lessons From A Heroic Early Aids Doctor: On The Legacy Of Joseph Sonnabend

It’s not astatine each memorial wherever mourners are not conscionable handed a programme of nan service, but besides fixed a pamphlet connected really to person safe cheery activity successful a clip of disease.

Then again, Joseph Sonnabend (1933-2021) was not conscionable immoderate doctor.

Dr. Sonnabend—or “Joe” arsenic astir group eulogizing called him—is often referred to arsenic 1 of nan world’s first AIDS doctors. Born successful South Africa, he was trained successful medicine, pathology, and virology successful South Africa and Scotland, earlier doing aesculapian investigation successful London and New York.  He opened a believe successful New York’s Greenwich Village successful nan precocious 1970s, wherever astir of his patients were cheery men.

Between his regular patients, arsenic good arsenic successful his activity staffing a free play session for sexually transmitted infections, Sonnabend was 1 of nan first doctors to not only notice, but to vigorously study, nan slayer which would first beryllium known arsenic GRID (Gay Related Immune Deficiency) and later known arsenic nan Acquired Immunodeficiency Syndrome.

Sonnabend died successful January of 2021, astatine nan tallness of world Covid restrictions. But connected April 13, dozens of his erstwhile colleagues, activists, and patients gathered to retrieve him successful words and music. Many were aged cheery men, immoderate frail erstwhile patients who survived nan plague—and nan memorial could good people nan past clip truthful galore of nan original surviving ACT UP activists whitethorn beryllium together.

Sonnabend had an different narration pinch nan group he treated. “I telephone them patients,” he wrote, but “they’re friends, really. It’s really difficult for maine to tie nan line” he said, arsenic good arsenic collaborators connected his research.

While “How to Have Sex” doesn’t dumb-down technological concepts aliases awkward from method language, it is besides written for laic readers and created a  exemplary of peer-to-peer education.

“Being Jewish I deliberation I’ve sewage a beardown consciousness of community, of looking aft one’s own. And having spent astir of my life arsenic a researcher, I ne'er acquired a doctor’s expertise to enactment detached. There’s nary measurement of switching disconnected from decease and misery.”

And though he died astatine nan extremity of nan first Trump management and his mourners couldn’t stitchery until nan opening of Trump’s second, nan bequest of Sonnabend and his collaborators near couldn’t beryllium much timely correct now. From nan pamphlet “How to Have Sex successful an Epidemic: One Approach” to their technological activity trying to understand what was causing AIDS (and really HIV was exacerbated by societal determinants of health) to starting nan world’s first patient-led aesculapian advisory board, nan lessons from their activity is urgent.

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The memorial was filled pinch group and markers of history—people who not only shaped aesculapian history successful wide and AIDS history specifically, but who shaped subject and American authorities much broadly. One of nan astir historical of nan speakers was Richard Berkowitz, who co-wrote nan 40-page pamphlet “How to Have Sex in  an Epidemic: One Approach.” As Berkowitz recalled, Sonnabend oversaw nan booklet arsenic aesculapian advisor and wrote its introduction. But, importantly, nan pamphlet was co-written by Berkowitz and Michael Callen—two AIDs activists without general aesculapian training who taught themselves, and their communities, astir this mysterious caller disease. (Callen died of AIDS successful 1993; he was conscionable 38 years old.)

The 1983 pamphlet Sonnabend, Callen, and Berkowitz published is important for aggregate reasons. It’s afloat of technological information, while admitting 1 of nan truisms of AIDS astatine nan time: nary 1 knew what caused it. It lays retired nan 2 starring theories, which some had immoderate truth to them. There was “The New Agent Theory,” which posited that location was a azygous pathogen causing AIDS which hadn’t yet been discovered (it would beryllium identified arsenic nan Human Immunodeficiency Virus a twelvemonth later); and, location was “The Multifactorial Theory,” which based on that “Rather than occurring aft a azygous vulnerability to sperm, this mentation suggests that nan syndrome ‘builds up’ complete a play of clip and continued vulnerability to ample amounts of cytomegalovirus.”

While nan microorganism successful nan second theory, CMV, flourishes because of HIV and does not solely origin AIDS, different elements of nan multifactor mentation person proven adjuvant for knowing really AIDS develops, why definite group pinch HIV go sick faster than others, and which peculiar opportunistic infections and diseases lead to nan illness of nan immune system.

But while “How to Have Sex” doesn’t dumb-down technological concepts aliases awkward from method language, it is besides written for laic readers and created a  exemplary of peer-to-peer education. With sections pinch objective names (“How Can I Find Out If I americium Contagious for CMV?” and “Learning to Estimate Risk”) to plain slang (“Getting Fucked,” “Closed Circles of Fuck Buddies,”  and “Backrooms, Bookstores, Balconies, Meatracks & Tearooms”), nan booklet is simply a landmark infinitesimal of harm reduction—the believe of knowing that abstinence from stigmatized but normal quality activities (ie, having activity and utilizing substances) is neither realistic nor adjacent for astir group to attempt. But, pinch a harm-reduction model, if group are fixed a much vulnerable prime and a safer choice, astir group will make nan safer choice.

Much arsenic immoderate of america recovered astir nan 2022 mpox outbreak, organization knowledge was cardinal to knowing that immoderate led to AIDS had thing to do pinch sperm; AIDS wasn’t causally transmitted done nan aerial (like Covid 19) and, thus, location were safe ways to acquisition sex, touch and intimacy. In his remarks astir Sonnabend, Berkowitz recalled a speech betwixt group surviving pinch AIDS who recovered themselves to beryllium untouchable and who asked, “Can’t we conscionable naughty disconnected together?” And possibly hug? “How to Have Sex” was not conscionable nan exemplary for projects for illustration nan 2020 Covid safer activity guide my colleagues astatine nan New York City Department of Health and I helped create and distribute, but for each mode of harm simplification campaigns complete nan past 4 decades.

The skepticism Sonnabend had arsenic intelligence was not nan hubristic ignorance of personification untrained for illustration Robert Kennedy, Jr.

Another humanities constituent to Sonnabend’s work was that it was held successful nan Judson Memorial Church, successful nan very room wherever nan People Living With AIDS caucus was formed, arsenic journalist Andy Humm shared. Much for illustration really aesculapian workers didn’t deterioration gloves anterior to AIDS (they only started doing truthful successful nan 1980s erstwhile cosmopolitan protocols were developed to dainty each patients arsenic if they were perchance carrying HIV), boards of group surviving with various diseases and conditions, who collectively measurement successful connected their care, did not beryllium earlier AIDS. PLWA group a caller modular of patients being experts connected their condition, ensuring that thing should hap to them without them.

Though he cared for galore patients who died of AIDS, Sonnabend besides cared for galore who lived until nan anti-retroviral “AIDS cocktail” treatments were disposable successful 1996. AIDS activistic Sean Strub, Yale nationalist wellness professor Gregg Gonsalves, and creator Jack Waters each said of Sonnabend not conscionable arsenic a researcher, but arsenic their individual physician. Strub, who coined nan term, “the viral underclass” (which is nan title of my first book), said astir really “Joe’s patients did amended and lived longer.” Gonsalves shared really he sent a affirmative relative to Sonnabend for care—and recalled really later, Sonnabend made a housecall to present Gonsalves’s ain affirmative test successful his home. Waters credited Sonnabend pinch utilizing a individual aesculapian attack to redeeming his ain life.

And yet contempt his legacy, Sonnabend was connected nan outs for overmuch of his last decades, leaving New York to unrecorded retired his days successful London, unfairly branded an AIDS-denialist, arsenic playwright Ash Kotak, Dr. Rebecca Pringle-Smith, and Lancet editor Mariam Lewis Smith said about. Before nan find of HIV, Sonnabend (like galore scientists) formed a wide nett to effort to understand what nan hellhole was going on.

But moreover though he prescribed to nan multifactor mentation aft nan find of HIV successful 1984, he did not contradict that HIV led to AIDS; rather, he recognized—correctly—that AIDs is simply a multi-system, multi-organ nonaccomplishment of nan immune strategy caused by immoderate number of combinations of opportunistic infections and diseases (such arsenic kaposi sarcoma cancer, CMV, pneumonia and tuberculosis). How, why and really severely those various combos develop—as I besides based on successful The Viral Underclass—is not wished solely by HIV, but by societal determinants of wellness for illustration poverty, racism, homophobia, transphobia, diet, genetics, and biology pollution. The skepticism Sonnabend had arsenic intelligence was not nan hubristic ignorance of personification untrained for illustration Robert Kennedy, Jr; he simply kept testing nan limits of existing theories and testing caller hypotheses successful nan technological tradition.

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The memorial wasn’t important conscionable to an AIDS historiographer for illustration myself. It is important because Sonnabend’s  bequest is not conscionable a historical artifact—it’s a modern blueprint. When ACT UP was first raising hell, nan Reagan and Bush administrations were openly hostile; and yet, management officials for illustration Surgeon General C. Everett Coop and National Institute of Allergy and Infectious Diseases head Anthony Fauci were, erstwhile pushed, dedicated to taming AIDS.

We person nary 1 successful posts for illustration that successful nan Trump administration. RFK Jr.  has been an existent HIV (not to mention vaccine) denialist. The Trump management has withdrawn from HIV investigation and prevention broadly, some domestically and internationally. The effects of this person been some contiguous (as Nick Kristoff reported, people person already died from a deficiency of AIDS medication) and will beryllium felt complete a agelong play of time. For instance, astir of nan investigation astatine nan Institute of Sexual and Gender Minority Health and Wellbeing astatine Northwestern University, wherever I americium connected nan faculty, has been paused aliases terminated, including a 15-year longitudinal study connected HIV successful men of color.

When LGBTQ and HIV/AIDS investigation is halted, nan existing wellness disparities successful minoritized communities will grow, much group will get HIV—and much group will dice of AIDS.

Can those of america losing our jobs conscionable springiness up? No. We must—like Joe and Gregg and Sean and Jack—do organization care. We must believe organization acquisition and harm reduction. We must attraction for each different successful nan look of authorities neglect.

And yet, Sonnabend had a job; truthful did Fauci (for decades). Today, tens of thousands (at least) of group who did HIV/AIDS activity are retired of jobs globally. And astir apt hundreds of thousands of wellness workers successful nan US and astir nan world are besides retired of jobs. Public wellness needs nationalist support from nan state, afloat stop. Sonnabend and ACT UP pushed and prodded and and forced nan NIH and NIAID and nan CDC and FDA—but they besides needed them. Now, each of those agencies has had devastating cuts, pinch their expertise to dainty nationalist wellness (and particularly sexual nationalist health)  destroyed.

For instance, nan laboratory that studied syphilis and tracks its mutations astatine nan CDC has been unopen down, its unit terminated; really tin we prevent, dainty and understand a mutating pathogen without a laboratory aliases immoderate scientists?

We can’t.

How tin we stop  nan amended portion of a cardinal world AIDS deaths from increasing if we are not getting narcotics into bodies?

We can’t.

For me, nan takeaway from Sonanbend’s memorial was this: After nan Democrats dismantled nan nationalist wellness infrastructure built up for Covid-19 2 years ago, and while nan Republicans are ripping to shreds arsenic overmuch of nan world nationalist wellness infrastructure arsenic they can, Sonnabend’s (and his collaborators’) exemplary of organization attraction is much important than ever. In a non-hierarchical way, doctors, patients, activists and—yes—even journalists must not only attraction astir each different successful extremist ways. That will not beryllium enough.

We must each besides driblet nan pretense of detachment from politics. As ACT UP did decades ago, we must push connected nan levers of nan authorities pinch everything we have, until it stops utilizing money for warfare alternatively of care. As Trump wants a trillion dollars for nan military, we must rally astir ACT UP’s 1991 telephone to “Fight AIDS, not Arabs!” much than ever.

Instead of war, fto fighting AIDS and syphilis and lead poisoning and pediatric cancer beryllium our rallying call.