Value Frameworks in Health Care: The Real Story from Real Patients

Family Heart Foundation Participates in Partnership to Improve Patient Care (PIPC) Briefing on Capitol Hill
June 20, 2016

Family Heart Foundation Director of Outreach, Cat Davis Ahmed, spoke alongside representatives from the Global Liver Institute, National Alliance on Mental Illness, International Myeloma Foundation, and CancerCare at House and Senate briefings on Capitol Hill in Washington, DC on June 20. The briefings were organized by the Partnership to Improve Patient Care (PIPC) to call attention to the potentially negative impact “value assessments” and a “one size fits all” approach developed without expert input, including input from patients, can have on people’s access to vital therapies developed and approved for their use. The Center for Medicare and Medicaid Services (CMS) is considering using value assessments in its proposed Part B Drug Payment Model.

the Family Heart Foundation shared its experience when FH was the subject of one value assessment by the Institute for Clinical and Economic Review (ICER) of a new class of treatment, PCSK9 inhibitors, recently approved by the FDA for patients with FH.

“We know from experience the ICER process does not meaningfully incorporate input from organizations like [the Family Heart Foundation] that could bring data and expert understanding to bear. We did submit public comments after the very public release of the draft Report, but still inaccuracies remain in the Report….the Family Heart Foundation believes the ICER Report [on PCSK9 inhibitors] includes incorrect information regarding FH, underestimates the risk intended FH patients face, and overestimates the cost to our healthcare system by presenting an unlikely uptake scenario for FH. The Report raises a false alarm when a more responsible approach would highlight the opportunity for heart disease prevention with early diagnosis and appropriate treatment of FH.”
Read Cat’s comments here.

Read the Family Heart Foundation’s Public Comments on the ICER Report on PCSK9 Inhibitors here.

https://thefhfoundation.org/have-you-heard-there-is-a-conversation-going-on-about-your-health-care/

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