Thayer Surette Roberts

SVP @thorn_run, Deputy Director @PIPCPatients, Board Member @MindsMatter_DC. Lover of sparkles and social events

[Alliance for Patient Access @patientaccess]

"The reality is we should be looking at value to the patient. This policy doesn’t work as smoothly as most states thought they would."

@PIPCpatients’ Thayer Roberts highlights how prescription drug affordability boards don't make medications affordable to patients. #AfPASummit24

[Thayer Surette Roberts @Thayer_S]

@JenniferHandt 's story makes so clear why patients and caregivers need a seat at the table as decisions are being made about their access to treatments.

[Jennifer Handt @JenniferHandt]

It's imperative #AdCom for $SRPT watch and absorb videos from patients and health care providers submitted as testimony on the public docket, and take them into full account when making a recommendation for #SRP9001. Here's why. #duchenne #DMD @US_FDA

https://t.co/r4mdfashyk

[Jennifer Handt @JenniferHandt]

It's imperative #AdCom for $SRPT watch and absorb videos from patients and health care providers submitted as testimony on the public docket, and take them into full account when making a recommendation for #SRP9001. Here's why. #duchenne #DMD @US_FDA

https://t.co/r4mdfashyk

[Thayer Surette Roberts @Thayer_S]

Thank you @kathjoyleen ...without your assistance it may have taken me months to realize this.

[Thayer Surette Roberts @Thayer_S]

Looks like my twitter was hacked...and not as creatively as the "yam yam yam sweet potato" incident of 2014....please disregard anything not related to health care, cats, or Taylor Swift until I get this sorted out....

[Thayer Surette Roberts @Thayer_S]

The potential gene therapy has for rare disease patients is incredible.

[Jennifer Handt @JenniferHandt]

"A 2 pt improvement on the North Star is associated with the gain of a function like jumping...a 6 pt improvement is an impressive change 18 mos later."
-Dr. Craig Zaidman

See #SRP9001 in action in kids w/#DMD: https://t.co/vUfRPaE8ud

#genetherapy #Sarepta #FDA #healthcare

[Health Affairs @Health_Affairs]

In his new Forefront article, @HonTonyCoelho from @PIPCpatients discusses how in implementing the Inflation Reduction Act’s drug negotiation provisions, @CMSGov should state it will follow the law + stay true to its commitment to health equity. https://t.co/mP2IGA1Ufu

[Partnership to Improve Patient Care (PIPC) @PIPCpatients]

"By setting appropriate standards, CMS could push researchers to abandon economic or clinical metrics steeped in stigma in favor of measures that encourage treatments valued by patients and people with disabilities." #ValueOurHealth #BeQALYAware https://t.co/Jjypp4Y0HY

[Partnership to Improve Patient Care (PIPC) @PIPCpatients]

NEWS: PIPC issues statement of support for @HouseCommerce legislation that would bolster existing protections against the use of #QALYs and other metrics that discriminate. #ValueOurHealth #BeQALYAware https://t.co/nCmNLXVCJ4

[Tony Coelho @HonTonyCoelho]

THIS👇: Matt Valliere w/ @PRAFund writes about real-world impact of a #QALY mindset - people needing costly care not covered b/c considered "worth less" than non-disabled. Not about $$ but assumes living with disabling conditions is fate worse than death. https://t.co/Rf3tWK5Spa

[The Bonnell Foundation @RoadmapToCF]

Thank you for supporting policies that promote science and and innovation and give patients like my daughters, hope for a cure. #science #innovation #laurabonnell #cysticfibrosis #cfcommunity #thebonnellfoundation

[Thayer Surette Roberts @Thayer_S]

Great @AJMC_Journal piece highlighting the shortcomings of the #QALY and the need to develop more nuanced, patient-centric metrics https://t.co/4ah9ibXjzS

[Thayer Surette Roberts @Thayer_S]

Thank you @PhRMA for your generous support of @MindsMatter_DC and our talented students through the PhRMA Scholars program. We are grateful to have you as a strong partner supporting our students' future in college and career. https://t.co/YcXWCsiPAA

[Thayer Surette Roberts @Thayer_S]

So impressed by @KhrystalKDavis testimony on #HR3 sharing her deeply personal story of a son with #SMA. Khrystal so clearly represented how complex our debate about health care policy is and why solutions must keep patients at the forefront.