I suppose we could just continue to muddle along.

And more than likely, that’s what will happen.

My ACT UP/New York generation, the ones I know best, is transitioning into old age.

Those who’ve made it this far

Pot-bellied from Biktarvy. Metabolic syndrome not from HIV but from cART. On an ever elongating list of “QOL” meds, for depression, for cholesterol. Reflux, anxiety, insomnia, impotence.

That’s not to say we’re faring appreciably worse than our HIV-negative brethren, something I alluded to in an earlier post. (And the ones aging absolutely the worst are the physicians!)

I grow old, I grow old. Shall I wear my trousers rolled?

Butchering Prufrock, sorry

It’s just that after the past month or so of confabbing with one of the very last HIV physicians to think independently, I am throwing up my hands. (Because so has he.)

Well, that meeting and then the back and forth, back and forth, with a handful of HIV immunologists in whose hands our fate seemed to rest.

Or at least, from whence was to spring out last, best hope

In a word or two: it isn’t pretty

Channeling my inner Larry

Missing Joe

Even Derek

I had started a blow by blow of the week of emails and literature searches. But, as my projects are wont to do, it quickly metastasized into something in serious need of organization and pruning. So alas, it sleeps here as a draft awaiting caring attention.

Trying to get to the point here

We are on our own.

Even among the small number of scientists and thinkers (and long ago activists/community organizers) who are not dependent on Gilead or ViiV or the rest for their funding or living standards, the proverbial left hand is not talking to the right.

(That’s Larry again. With maybe a bit of Gregg or Garance thrown in.)

Most of them, the HIV researchers, are of retirement age. Treading water as it were until their pension kicks in.

Others jumped ship for the Covid research funding bonanza.

The younger ones, even the best intentioned and brightest of them, are working in silos. There is all this clinical experience and knowledge outside of government, outside of the strictest bounds of internal medicine and ID and immunology, that they do not avail themselves of. Are even oblivious to.

The government funded researchers especially, tack to the safest candidates, the most conservative study designs, and/or products that come with a deep-pocketed commercial backer (e.g., BMS).

Yeh, talking about you, dasatinib.

Please someone tell me that there is this non-profit I am unaware of that is compiling and cross-referencing and even serving as something of a clearing house and switch board to make sure all the different little potentially productive pieces and their producers are aware of and communicating with one another?

I just don’t see it.

I cannot help but think back to an early amfAR meeting I was called into. It was autumn 2013. They were getting ready to launch their cynical "Countdown To A Cure" campaign. $20M by 2020. Twenty million dollars. Notable that the marketing team not the science team (there was no real science team; only Rowena) headed up the meeting. “Kevin’s not on board with this yet, but he’ll come around,” the marketing head promised us. She knew as well as anyone that he wouldn’t want to jeopardize his Soho House life. No one at 120 Wall ever believed what they were selling. It was Trumpism before Trump. (Okay, before the very worst of him.) Everybody now only thinks about money. Even in HIV/AIDS.

We will die on the dance floor from a sudden MI. Just like the old days. Only this time it won’t be the GHB but the Tivicay.

Or our depression (because it was misunderstood then misdiagnosed then mistreated) will imperceptibly morph into dementia. And we’ll be carted off to a HIV-themed memory center somewhere. Maybe in Palm Springs or P-town, for the luckiest MSM+ among us? I doubt we even have things like that in place. And what about the women?

(Why is no one measuring quinolinic acid or heck even kynurenic acid in PLWHs?? Why no 4R/5R gut repair protocols? Why no routine nutritional analyses— the way we used to check T-cell counts and viral loads obsessively every 3 months? Folate/B12, amino & essential fatty acids, Mg-Zn-Se-Cu-Mn, antioxidant status, GSH at the very least.)

We all had such promise once. We were going to change the world. But the world ended up changing us. I suppose that’s what happens to revolutions.

The wind blows the water white and black.

Mike Barr, a longtime Poz Contributing Editor and founding member of and scribe for both the ACT UP/New York Treatment + Data Committee and the Treatment Action Group (TAG), is a functional medicine practitioner and OM herbalist in NYC, NJ (and Northern Liberties, PA). Reach out to him here.