Value Our Health represents patient and disability groups supporting patient-driven health care solutions for all
Joined May 2019
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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
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.
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
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
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!
Value Our Health retweeted
The Dutch Healthcare Institute has eliminated certain cancer inhibitors from the basic health insurance package for specific patient groups because of cost-effectiveness issues. #MFNHurtsPatients #ValueOurHealth
Value Our Health retweeted
Restrictive pricing controls in Australia for a Cystic Fibrosis treatment has resulted in patients paying $250,000 a year for treatment that is widely available elsewhere. #MFNHurtsPatients #ValueOurHealth
Value Our Health retweeted
Nearly 90 organizations & counting signed an Open Letter urging policymakers to reject policies that devalue & ration care for any American whether modeled after foreign or domestic value assessment methodologies. #ValueOurHealth #MFNHurtsPatients
Value Our Health retweeted
Patients deserve timely access to affordable treatments.
It's encouraging to see progress in endometriosis care after so long.
Let's continue to advocate for health equity!
@_ValueOurHealth #ValueOurHealth #IPIHurtsPatients
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
Patients suffering with epilepsy and advocates are calling on the Saskatchewan government to provide public coverage for a new anti-seizure drug. #IPIHurtsPatients #ValueOurHealth cbc.ca/news/canada/saskatche…
Value Our Health retweeted
An endometriosis treatment will finally become available under the PBS, representing the first new affordable treatment for the condition in 30 years. Patients should not have to wait decades for costs to be lowered. #ValueOurHealth #IPIHurtsPatients 9news.com.au/national/federa…
Value Our Health retweeted
Restrictive coverage policies often times force patients with rare diseases to turn to crowdfunding and other means of raising funds while the government drags its feet on price negotiations. #IPIHurtsPatients #ValueOurHealth mamamia.com.au/jemma-juckes-…
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The National Institutes of Health is in the initial stage of developing an agency-wide NIH Strategic Plan for Disability Research. Learn more on how you can participate at the upcoming town hall on December 3: dpcpsi.nih.gov/disabilityres…
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New Zealand still has relatively limited options for oestrogen therapy compared to Australia, the UK, Europe and the USA. #IPIHurtsPatients #ValueOurHealth pipcpatients.org/blog/pipc-w…
Value Our Health retweeted
Nine blood cancer drugs that have demonstrated "significant clinical benefit" have not been approved for funding by the Cancer Control Agency in New Zealand. #IPIHurtsPatients #ValueOurHealth rnz.co.nz/news/national/5320…
Value Our Health retweeted
Cost-effectiveness and risk-sharing agreement policies are limiting spending on drugs for critical illnesses in South Korea. #ValurOurHealth #IPIHurtsPatients hitnews.co.kr/news/articleVi…
