Thread by @meighanstone

#HHSLongCOVID livestream has started. In just first few minutes, @SecKennedy has announced this meeting is indeed the "kick off" of a new "Long COVID Consortium", cited HIV/AIDS patient efforts like Dallas Buyers Club & repeated his personal family connection to Long COVID. 1/x

@SecKennedy @RogerMarshallMD speaks about his own son with #LongCOVID, cites Drs. Vaughn, Patterson & Redfield as contributors to his son's care. 2/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA: "Long COVID is real," then says "nothing" achieved by NIH with over $1.5B in funding, expresses commitment to working on this challenge. 3/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA I'm humbled, as I was that woman & #LongCOVID patient who spoke with @NIHDirector_Jay after his confirmation hearing. Thanks Dr. Bhattacharya for your kindness in speaking with me that day, when you had every reason not to stop—thank you for reaffirming your commitment today. 4/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay Patient-advocate & @LongCFoundation founder Devin Russell shared his patient perspective, speaking to the outstanding needs & how challenging his many, complex #LongCOVID symptoms have been to navigate & manage. 5/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab spoke to clinical experience treating patients at Mt Sinai, lessons from HIV/AIDS & Cohen Center's recently launched clinician handbook for #LongCOVID & other infection-associated chronic illnesses, including MECFS, long Lyme, Ehlers-Danlos syndrome, POTS & others 6/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 speaks to maraviroc, rapamycin options, shifting to @NIHDirector_Jay notes on four @NIH RECOVER-TLC trails announced last week, @PutrinoLab speaking to doing clinical research without NIH funding & need to move faster, notes EUAs, @invivyd mAbs partnership 7/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd Why that exchange between @NIHDirector_Jay & @PutrinoLab is especially relevant: many patients have requested that the @NIH fund research led by @polybioRF & their partners like @PutrinoLab. It would be a welcome & positive development if that changed out of today's meeting. 8/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF Going to just state: top of Long COVID patient needs list is rarely another website. We've had too many "website interventions". We need a sense of urgency, to expand & refine NIH & ARPA-H research portfolio, get real FDA clinical trials glide path & FDA-approved treatments. 9/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF Devin from @LongCFoundation redirects group in closing minutes to a critical discussion on viral persistence research needs, including antivirals over longer courses & in combination therapies. Second session starts in 30 minutes. 10/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF We're back from break: @SecKennedy notes biomarkers importance, @brucep13 now speaking about treating #LongCOVID patients, reports he's been fundraising last 18 mos for his trial of maraviroc & pravastatin, his position on viral persistence / replication research theories. 11/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF @brucep13 @MichaelPelusoMD speaks to three critical parts of scaling up clinical trials: (1) flagship biomarker program, (2) faster & bottom up clinical trial approach (3) promote industry investment & engagement in #LongCOVID, notes HIV/AIDS lessons learned 12/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF @brucep13 @MichaelPelusoMD Paying close attention, as been been pushing for close to 2 years on US govt #LongCOVID research portfolio expansion to @ARPAHealth, Acting Director Roos says today will inform "investments intending to make very soon" on Long COVID, notes repurposing drugs & biomarkers! 13/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF @brucep13 @MichaelPelusoMD @ARPAHealth It sounds like some real news was just made today by @SecKennedy @HHSGov: it appears @ARPAHealth WILL now take on #LongCOVID for the first time, after two years of patient advocacy & outreach! A huge testament to our Hill partners & community engagement. #HHSLongCOVID 14/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF @brucep13 @MichaelPelusoMD @ARPAHealth @HHSGov @zalaly speaks to lack of access to NIH dataset, spurs a quick, practical problem-solving session between @SecKennedy "seems like a no brainer" & @NIHDirector_Jay "I'm absolutely committed to making this happen". Will be interesting to track progress out of the meeting. 15/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF @brucep13 @MichaelPelusoMD @ARPAHealth @HHSGov @zalaly #LongCOVID Champion @SenToddYoung asks @SecKennedy about @FDA options to accelerate #LongCOVID clinical trials & drug approval & if @HHSGov can host a roundtable with pharma—these would be huge opportunities for progress & patient community if are outcomes from this meeting. 16/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF @brucep13 @MichaelPelusoMD @ARPAHealth @HHSGov @zalaly @SenToddYoung @FDA Really grateful for @MichaelPelusoMD helping group circle back to @US_FDA guidance / collaboration needs & pharma roundtable questions just raised by @SenToddYoung! Follows good exchange between @VirusesImmunity & @NIHDirector_Jay on research pathways & collaboration. 17/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF @brucep13 @MichaelPelusoMD @ARPAHealth @HHSGov @zalaly @SenToddYoung @FDA @US_FDA @VirusesImmunity The #LongCOVID community owes some gratitude to champion @SenToddYoung, who just circled back to convening a #LongCOVID pharma roundtable & offered to @SecKennedy to host it on Capitol Hill. It's a huge outcome of this meeting that patients have needed for years. Thank you! 18/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF @brucep13 @MichaelPelusoMD @ARPAHealth @HHSGov @zalaly @SenToddYoung @FDA @US_FDA @VirusesImmunity Great hand-off @MichaelPelusoMD & @VirusesImmunity on how even failed clinical trials valuable, notes Paxlovid trial, how were able to move quickly & affordably in a decentralized manner using next-generation trial platforms & meeting patients where they are: home very sick. 19/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF @brucep13 @MichaelPelusoMD @ARPAHealth @HHSGov @zalaly @SenToddYoung @FDA @US_FDA @VirusesImmunity Another huge @SenYoung moment, directly asks @ARPAHealth Acting Dir. Roos what specific timeline is to launch #LongCOVID work: "we've already begun this discussion", ARPA-H will get a plan for feedback out in "weeks, not months...we're very committed to doing this quickly" 20/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF @brucep13 @MichaelPelusoMD @ARPAHealth @HHSGov @zalaly @SenToddYoung @FDA @US_FDA @VirusesImmunity @senyoung As wrap up, @MichaelPelusoMD critical point US govt-funded research only has best opportunity to succeed if implement dedicated, informed #LongCOVID grant review panels, faster turnarounds. @brucep13 agrees, shared delays he's faced. Another overdue change & win if happens! 21/x

@SecKennedy @RogerMarshallMD @DrMakaryFDA @NIHDirector_Jay @LongCFoundation @PutrinoLab @DrBobRedfield51 @NIH @Invivyd @polybioRF @brucep13 @MichaelPelusoMD @ARPAHealth @HHSGov @zalaly @SenToddYoung @FDA @US_FDA @VirusesImmunity @senyoung #HHSLongCOVID meeting now wrapped! Some BIG announcements today & real openings on collaborative work to further #LongCOVID research. Doing policy analysis now, will share some key "takeaways" & post full transcripts once have to share! Brass tacks: THE NEEDLE MOVED TODAY. 22/22