#LongCOVID Community: As been tagged into few Trump Admin health nominee discussions, I thought to share brief, non-partisan "state-of-play" backgrounder thread, with focus on *REALISTIC* advocacy openings, as so many of us have serious limits & don't want to waste precious🥄 1/x
Disclaimers first: Pre-COVID, did health & nonprofit advocacy 20+ years, grateful for dear colleagues both sides of aisle & my default: always try to work together but focus on REALISTIC openings if limited resources. As ever, you may be smarter or have better ideas, so YMMV 2/x
Trump health nominees TLDR: whether adore or abhor, my candid counsel is don't waste much effort thinking could change names. Why? Senate leaders will only QUIETLY, behind-the-scenes, be able to change or block a few of OVERALL admin nominees & sadly, health not top of list. 3/x
Mechanics: Sen. Thune (R-SD), when elected new Senate majority leader this week, told press he'd STRONGLY support Trump nominee slate BUT also wants to have traditional Senate confirmation hearings. This both communicated loyalty & created opening for back-room negotiations. 4/x
Is there still a chance President-elect Trump secures his preferred "recess appointments" (so no Senate hearings)? Sure. But Senate tradition is a "deliberative body" & Senate Rs elected Sen. Thune, not Sen. Scott, for a reason: they want a side of decorum with Trump mandate. 5/x
If Sen. Majority Leader Thune ensures nominee confirmation hearings, will be MASSIVE prep, including intel & other vetting processes. More conservative senators can then, privately, try to use that info to backchannel to Trump team to negotiate changing a couple nominees, MAX 6/x
Brass tacks if tracking health nominees: conservative Senate Republicans will prioritize defense, intel & law, so will likely try & use those VERY limited chits on Sec Def (Hegseth) AG (Gaetz) & Dir of Natl Intel (Gabbard). Very unlikely will horse-trade on health nominees. 7/x
With that realpolitik, where COULD community best advocate? If confirmation hearings happen, Senate HELP Committee has jurisdiction over *most* health nominees, but RFK Jr. nomination actually goes through FINANCE Committee. So we can engage Senate & nominees around hearings. 8/x
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📣#LongCOVID Community 📣 Senate Appropriations Committee just posted FY25 Labor-H and Defense bills and report text, reviewing now, will post notes & flags in this thread after parse through documents: 1/xappropriations.senate.gov/hearings/full-…
Starting with "win" in Defense FY25 bill report: we got Long COVID added for the first time to the Peer-Reviewed Medical Research Program! This means researchers can access a pool of $370 million in funding. MECFS also made it as an approved condition to access these funds. 2/x
OK, somewhat hilariously, the @SenateApprops page isn't working properly! Someone put these FY25 LHHS docs up, headed for the exits for that sweet, sweet Recess vacay & we got a Senate 404 error folks! Think just tricked it into getting text anyway! Reviewing... 3/x
#LongCOVID Community Organizing 🧵How you can take action for Thursday's Senate NIH funding hearing:
📣Advocate stipends to come to DC
📣GoFundMe to help advocates attend
📣How to submit YOUR testimony to Congress!
📣How to request Senators ask NIH about Long COVID at hearing
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📣Just like January #HELPLongCOVID hearing, we want to pack the Senate NIH hearing room with diverse group of #LongCOVID advocates. I've pledged up to $5K in patient travel stipends & @lcccampaign media support. Quick 10-Question stipend application: 2/xforms.gle/sPVBBkqTwSBPta…
📣Patients not able to come to DC have again asked how to chip in so other chronically ill & disabled #LongCOVID advocates can. 100% of donations will go to NIH hearing travel stipends & I'll donate my own medical GoFundMe funds to cover any difference 3/x gofundme.com/f/help-long-co…
🚨 NIH FY25 Senate Appropriations Hearing Now Confirmed for May 23, 2024 🚨 Why does this hearing matter so much for the #LongCOVID community & why am I donating patient-advocate travel stipends to come to DC again & organizing via @LCCampaign? A 🧵 1/x appropriations.senate.gov/hearings/a-rev…
@LCCampaign This May 23 NIH Senate FY25 Appropriations hearing is one of the VERY FEW public moments before the election when the #LongCOVID patient community can organize & call for Congress & NIH leaders to better respond to urgent need for expanded & accelerated research & treatment. 2/x
@LCCampaign Look, a "Senate FY25 Appropriations Hearing" sounds about as exciting as a dry civics class lecture. But what it REALLY is: a public, on-the-record discussion with key US leaders on how the US government will fund & prioritize #LongCOVID research next fiscal year--or not. 3/x
THREAD: @NIHDirector announced "investing an additional $515m USD" over 4 years today in #NIHRECOVER. So what does this release say or not say & what does this mean for the #LongCOVID community? Sharing my humble take, if any of this resonates with other patient advocates. 1/x
@NIHDirector First, the political positioning: today's @NIH RECOVER funding announcement clearly planned to temper @CDCgov staff (likely also planned) leak will change 5-day COVID isolation guidance, imperiling vulnerable & disabled folks & perpetuating pandemic 2/xwashingtonpost.com/health/2024/02…
@NIHDirector @NIH @CDCgov Second, I didn't seen any #LongCOVID group come out with a FAST statement today. Nor have I heard any group say @NIH reached out with a heads up. This shows NIH doesn't yet recognize utility or need for real engagement with #LongCOVID groups, as would've done that diplomacy. 3/x
#LongCOVID community: Folks have shared they can't attend Jan 18 Senate #HELPLongCOVID hearing in Washington DC but want to donate to help other disabled & chronically ill advocates attend & organize. There's now a GoFundMe up, if you want to chip in: 1/xgofund.me/34330e95
I'm not an entity or non-profit, just part of an informal group of disabled & chronically ill folks open-source organizing with our own spoons & pennies. As so many of us are on limited incomes, I wanted to make sure anyone who feels able to give has donation transparency, so 2/x
For anyone able to chip in, I'm committing to posting online within week of Senate hearing how every GoFundMe dollar donated was spent, for community transparency & trust. All funds will be directly, quickly deployed on advocate stipends & community organizing for this event. 3/x
For other #LongCOVID folks, I’m nearing end of COVID reinfection acute phase & thought I’d share my experience & some resources for other chronically ill or disabled folks. This COVID reinfection has been a rough ride– this new variant took me down fast, hard & severely. 1/x
#1: DON'T TRUST ABLE-BODIED PEOPLE WITH YOUR HEALTH WITH THIS SURGE & VARIANT. Dear friends let a sick & symptomatic person join a 10-person holiday celebration, despite knowing I’m immune compromised with Long COVID. Me & my son got COVID after always masking the last year. 2/x
The practical, human cost of current COVID disinfo or lack of awareness? It makes good people believe political talking points instead of lived experience of disabled & chronically ill people they care about. NOW MORE THAN EVER-- they just can't understand your health risks. 3/x