Value Our Health represents patient and disability groups supporting patient-driven health care solutions for all
Joined May 2019
- Tweets1.4K
- Following127
- Followers3.1K
- Likes744
Pinned Tweet
Check out this new @PIPCPatients resource to learn more about different metrics used in value assessments and the tradeoffs of each. tinyurl.com/5n6ckzsp
Value Our Health retweeted
Glad to be at the @RareDiseases Summit for some Breaking News.This morning I attended the Rare Disease Regulatory Roundtable, moderated by @ComstockRi54463 Assoc. Director of the FDA rare disease hub. Guest speaker #karimMikhail made an announcement about individual gene therapy. He is Director of CBER. Watch it here! Very exciting! @FDA @DCOfficial #science #innovation
Evidence clear international drug pricing means delayed & denied access to care for rare disease patients. Read #ValueOurHealth paper providing policy lessons from UK’s System, alongside co-authors at United Liver, @speakfoundation & @CFRI_CureCF. cfri.org/wp-content/uploads/…
Learn more about the #QALY and why older adults, people with disabilities and patients with serious chronic conditions oppose use of #QALYs to value health care. #ValueOurHealth youtube.com/watch?si=z-mARWN…
We could not agree with PIPC's statement more - @CMSgov cannot claim to avoid use of QALYs when they are clearly the threshold for pricing in other countries that is being imported to the United States.
pipcpatients.org/news/pipc-s…
Value Our Health retweeted
We urge policymakers - whether in the administration or Congress — to reject proposals that import cost-effectiveness metrics like the quality-adjusted life year from Europe and elsewhere. #ValueOurHealth #MFNHurtsPatients
Value Our Health retweeted
PIPC issued the following statement in response to President Trump's call to codify #MostFavoredNations drug pricing policies during tonight's State of the Union Address.
Value Our Health retweeted
Paula, a patient living with primary biliary cholangitis, shares her struggle living with PBC and describes her challenges in accessing newer, more effective treatments for her condition that are not available in Ireland, but are in other countries like the United States.
Must read @HealthAffairs: "By devaluing interventions for people with disabilities based on arbitrary financial thresholds, PDABs create cascading failures in care delivery.” #ValueOurHealth
Value Our Health retweeted
New Episode - Out Now!
This episode features Deana and Liam Wilson — the incredible mother and son behind Liam’s Mission. When Liam was diagnosed with cystic fibrosis at just 3 weeks old, Deana’s world changed forever. What started as a mother’s fight has blossomed into a powerful movement spreading hope, creativity, and courage to families and educators everywhere.
Listen now on @Spotify to hear how they’re using storytelling and advocacy to transform emotional wellness — and why their message “hope is louder” is inspiring so many beyond the CF community.
Host: @LauraTbonnell
Sponsors: @ViatrisInc and @VertexPharma
#LiamsMission #HopeIsLouder #CysticFibrosis #ChronicIllnessWarrior #Advocacy #EmotionalWellness #PodcastLife
Organizations supporting #ValueOurHealth believe everyone’s health is valuable. Delays & denials are output of health systems relying on #QALY and similar measures that discriminate. Don’t import them. #MFNHurtsPatients
Stories like the Williams’ family's struggle for access to treatment in Canada clearly illustrate why #QALYs have no place in U.S. policy. #MFNHurtsPatients youtu.be/1MwieBU66uA?si=k3yq…
Value Our Health retweeted
In this episode, five passionate advocates reflect on their trip to DC, and experts dive into biotech, policy, and innovation.
A must-listen for anyone driven by change, advocacy, or big ideas.
Watch on @YouTube or listen on @Spotify on Monday, 7/21.
Host: @LauraTbonnell
Make your voice heard! #ValueOurHealth
Live in CO & take Enbrel, Simponi, Humira, Cimzia, or Remicade? Join us Friday, July 11, to speak out against forced medication changes made for cost, not care. Help protect your access to the treatment that works for you. Learn more: eachpic.org/pic-voices. Please share!
Value Our Health retweeted
If you live in Colorado, and or on any of the below meds, or know someone who is...they need your help to advocate! Please do what you can to help.
Live in CO & take Enbrel, Simponi, Humira, Cimzia, or Remicade? Join us Friday, July 11, to speak out against forced medication changes made for cost, not care. Help protect your access to the treatment that works for you. Learn more: eachpic.org/pic-voices. Please share!
