Thayer Surette Roberts (@Thayer_S) header
Thayer Surette Roberts (@Thayer_S) profile picture

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

Washington, DC
Joined March 2011
Photo by Thayer Surette Roberts (@Thayer_S)Photo by Thayer Surette Roberts (@Thayer_S)Photo by Thayer Surette Roberts (@Thayer_S)
"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
3
3
181
Thayer Surette Roberts retweeted
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 wbur.org/cognoscenti/2023/05…
3
4
2
28
3,506
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....
1
164
Thank you @kathjoyleen ...without your assistance it may have taken me months to realize this.
1
1
120
The potential gene therapy has for rare disease patients is incredible.
"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: youtube.com/watch?v=Gztl8ueW… #genetherapy #Sarepta #FDA #healthcare
1
2
215
"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 pipcpatients.org/blog/chairm…
2
1
170
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 pipcpatients.org/blog/statem…
2
6
1
10
1,023
Thayer Surette Roberts retweeted
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. newsweek.com/brutal-tragic-c…
3
7
2
10
Thayer Surette Roberts retweeted
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
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. catalyst.phrma.org/new-phrma…
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.
Thayer Surette Roberts retweeted
Good read: In Canada, access to vaccines has lagged, just like access to new therapies lags there. Let’s think twice before we look at other countries as a model. We must do better, but grateful the U.S. works toward access & nondiscrimination! ottawacitizen.com/opinion/gr…
5
4