We Want Our Name to be a Demand...

Action items, updates, videos and more from Cranky Queer -- and hints for a big January launch

Not since the emergence of the AIDS pandemic has there been such an imperative for large-scale change in healthcare, public health, and unjust structures that bring inequitable risks of illness, suffering and mortality.

From the draft brief for something big we are launching in January…

I am honored to be working on something big. It’s launching in January and I want you to be a part of it. We need to change everything, and we’re going to help do it. (Also, we need funding, so if you know anyone who is looking to unload some money before year’s end, send them my way. For real.)

In the meantime, so much going on… Here we are on the day after World AIDS Day (December 1), which is really World AIDS week, month, year, lifetime…

Medley

Today I woke up worn out — and felt even more so when I read of the Biden administration announcements on how they’ll confront the ongoing pandemic and encroaching Omicron variant. Big moves like making home tests kits reimbursable by insurance. After you fork out the money. At some point.

So, like any good sick queer Jew, I had to write and perform a Christmas Medley from my bed, and try to get all of you to watch it. Here it is, and you can share this short link if you’d like: bit.ly/xmascovid (… and can you believe that that xmas covid had not yet been taken?!?!)

Finger Pointing, Past Edition

What an incredible honor and treat to be named by AIDS United head guy Jesse Milan as the person who immediately comes to mind when he thinks about ACT UP, in the opening paragraphs of this NBC Out World AIDS Day story:

He recalls me pointing my finger at him while he was running a Ryan White Planning Council meeting, saying “I will never forget it. That’s how important ACT UP has been in holding people accountable for the work that we need to do. That image informs and inspires and guides me all the time.”

The honor of being remembered for my strategic audacity is definitely a testament to my mentorship at the militant hands of people living with HIV like Kiyoshi Kuromiya and so many others, so it feels like a full circle right back to where Jesse and I have both have remained, in different but complementary ways: centering the lives and well-being of people living with HIV.

It is also so incredibly affirming to have ACT UP Philadelphia in the opening of that story, which goes on to (as most all others do) to talk only to people from ACT UP NY (albeit some of my favorite ones like media genius Ann Northrup!)

Speaking of which, I am so grateful to Keith Brand for his intense, hour-long radio documentary on my mentor Kiyoshi Kuromiya, which aired on World AIDS DAY on the independent Philadelphia station WPPM. Brand spoke to so many of us who loved Kiyoshi, like David Acosta, Jane Shull, Chris Bartlett, Heshie Zinman, me, and others, and those who have come to love him as his dedicated historians diving into his incredible life at the forefront of civil rights, like the visionary Che Gossett.

We need to get this aired on radio everywhere! If you know of a station that would run it, please contact me and I’ll get you in touch with Keith. Keith is also working on a full website that’ll include the program and much more footage/info about Kiyoshi.

And thank you to Judy Sisneros, relentless archivist and documentarian of West Coast queership and ACT UP LA, for sending me the 6 minute video from the ACT UP Los Angeles Oral History project that gives today’s newsletter its title. The video features 3 members of the group recalling its power and practices, including the beloved Dont Rhine, who always expands my mind and heart, who says “We want our name to be a demand...”

Finger Pointing, Here and Now

On World AIDS Day (not by intention, but I love that), the Patient-Led Research Collaborative (PLRC, of which I am a contributing member) released an open letter to all involved with the NIH RECOVER Initiative on Long COVID / Post-acute COVID sequelae (PASC). It explains that:

… This initiative -- which has raised the hopes of the millions who are struggling with the myriad challenges of Long COVID even as the COVID-19 pandemic persists -- is in grave danger of failing at its goals.

Patient advocates have warned about many fundamental concerns, including those we have documented here.

But despite our standing -- as people living with Long COVID who conducted the first research on the phenomenon, as those who host platforms for dialogue and peer support for tens of thousands of people with Long COVID, and as those with wide and deep personal and professional experience with Long COVID --  we have no access to important information about the RECOVER plans and often no way to tell if or how our concerns have been addressed.

Further, even though some of us were invited to give input in the first phase, we have seen no ongoing mechanism for input nor confirmation that our input was put into action.

The letter links to a central list of concerns, and puts forth a comprehensive proposal (for which I serve as corresponding author) for the Meaningful Involvement of Patient Advocates (MIPA) in RECOVER, created and endorsed by PLRC and Body Politic

See what we did there?

MIPA, when it stands for Meaningful Involvement of People with (HIV)/AIDS, is a central foundation of HIV activism, based on the 1983 Denver Principles insisting that people living with HIV/AIDS (PLHIV) must be in authentically-powerful positions in discussion or deliberations affecting their lives.

That includes, or perhaps especially includes research — and the centering of real input (not toothless “advisory boards”) of PLHIV is widely credited as an essential reason for the drastic progress in HIV research leading to plummeting death rates, hugely effective prevention methods, and a very high quality of life and normal lifespan for many people who can access treatment and care (though we know many still may face stigma, bias and systemic and interpersonal violence).

We’re scaffolding the growing Long COVID movement with love and support from people living with HIV and allies. And that includes insisting that people with Long COVID need to have high-level involvement with RECOVER and anything else that affects their lives…

HIV Advocates for Long COVID Justice

… And that’s why I’ve put a special call out for PLHIV and HIV advocates to endorse the PLRC and Body Politic letter / proposals. When you click on this form, you’ll see you can endorse the letter and proposal as yourself and/or an organization — and you can also send a message of support and solidarity to people with Long COVID - so please do!

There’s more but that’s already a lot. So bye for now, and please keep in touch.

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