In some cosmic coincidence I found myself reading Beverly Gage’s enthralling history of J. Edgar’s creation of and stewardship over the FBI at the same time I am re-reading (and re-reading) Karl Herrup’s blood-chilling history of the malignant expansion of an Alzheimer’s research bureaucracy, aided and abetted by not just the medical foundations and the NIH’s own National Institute on Aging but also hope-filled if hoodwinked sufferers and their advocates, expertly co-opted and manipulated by pharma forces to spin narratives supportive of their imminently more mercenary ends. The parallels to our lived experience of “Tony,” NIAID, DAIDS, and the ACTG, are uncanny if not entirely congruent.
Yale historian professor Beverly Gage writes in the introduction of her 800-page, Pulitzer prize winning tome (that she spent more than ten years writing):
“J. Edgar Hoover transformed a failing law-enforcement backwater, riddled with scandal, into a modern machine. As FBI director, he was a confidant, counselor, and adversary to eight U.S. presidents, four Republicans and four Democrats. He was not above using his office to intimidate his enemies, but he also believed the federal government could do great things for the nation. He stayed in power, decade after decade, using the tools of state to create a personal fiefdom unrivaled in U.S. history.”
Of course, I couldn’t help flipping straight to the more salacious bits, chapters 13-14 and again in chapter 17, where he exchanges bawdy, flirtatious letters with a Clark Gable-type recruit at the Cincinnati field office (there’s a 1974 movie about him), then cryptically calls him home to D.C. only later (after things didn’t quite work out?) to be exiled to Oklahoma City and by 1935 out of the bureau completely.
It got me thinking too that someone must be working on a similar exploration of Dr. Anthony S. Fauci’s history-making direction of the HIV/AIDS research effort over the past 39 or so years. Jon Cohen, maybe?
Of course I couldn’t help flipping straight to the more salacious bits, where the austere FBI head peppers a Clark Gable-type recruit at the Cincinnati field office with a stream of flirtatious missives.
And kind of makes me miss Larry, even if he seemed to maddeningly careen nonsensically between strident (if mostly broad brush, impressionistic) critique and fawning adulation of both the man and his ministries.
(I haven’t yet watched the PBS treatment of him. And am kind of loath to read RFK.)
Turns out not just the F Man but also the H Man and (a different) G Man all hail from Bensonhurst. Who knew! (Janet Yellen is from the nearby, arguably more verdant and sea-breezed Bay Ridge.)
Professor Herrup, in the intro to his October 2021, what I could only characterize as an, exposé, states humbly (the outrage, even if sepia-toned, comes later),
"My goal is to take you on a fascinating journey through my world— the world of Alzheimer’s research— and help you understand where we are in our struggle to find a cure."
His real agenda, though, is to meticulously document how a misappropriated (and cynically promoted) case report of the alleged Patient Zero and, decades later, bureaucratic maneuvers designed to suck up as much NIA funding as possible for the research foundations morphed into a Thinkpol morass that would enrich the insiders but greatly disserve both the public and the science. (More on this in an up-coming post.)
Prof Herrup meticulously documents how self-aggrandizing ploys designed to Hoover up as much Alzheimer funding as possible metastasized into a capitulation to a sort of self-policing Thinkpol that generously rewards the faithful but greatly disserves both the public and the science.
ACT UP/New York Treatment + Data Committee’s beautiful minds, Gregg Gonsalves and Mark Harrington, shortly before its fitful divorce from the greater group, initially took on the beginnings of such a project, with the help of, if memory serves, one or two others. What would a similar project look like today?
Year after year we would write in the Digest and then TAGline about the perennial tussle for funds and focus between the immunologists and the virologists. Of course the virologists prevailed, perhaps duly so, but one wonders if a similar legacy of distorted funding incentives and the meddling of industry, as Prof Herrup so compellingly describes in "How Not To Study A Disease," is an under-appreciated current even today.
In December 2021 the International AIDS Society (of all groups!) published with great fanfare its "Research Priorities For An HIV Cure.“ One cannot help but marvel (or wince) at how the language so eerily echoes amfAR’s ”Countdown To A Cure" announcement, launched nearly an entire decade prior. Heck, much of the IAS language, for me, harkens back to 1994.
“In the next decade, we expect to see a greater understanding of HIV reservoirs, an increasing number of clinical trials and hopefully reports of individuals who achieved long-term remission with less intensive and more widely applicable strategies. On the basis of the current understanding and lessons from ART, it is likely that a combination of these approaches may be the first approach to be implemented. Inclusion of knowledge from fields such as oncology and Covid-19 could also greatly facilitate progress.”
The IAS rouses us to gird our loins for all the great progress to come over the next ten years. So we watch— and watched. We waited— and wait. In 2014. In 2022. And are told to stay tuned for all the fantastic therapeutic breakthroughs on the way ... in 2034. For HIV research programs, researchers, foundations, advocacy groups, and all who rely on the aforementioned for funding, it’s a kind of Orwellian gift that keeps on giving. The rest of us get, I guess, galas and walkathons.
Mike Barr, a longtime Poz Contributing Editor and founding member of and scribe for the Treatment Action Group (TAG), is a functional medicine practitioner and herbalist in NYC. Reach out to him here.
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