The FH Foundation joined the Partnership to Improve Patient Care (PIPC) and other organizations advocating for patients with disabilities and chronic illness on January 11, to ask Senator Ron Wyden (D-OR), Ranking Member of the Senate Finance Committee with jurisdiction over Medicare and Medicaid, to help ensure that healthcare policy is informed by what matters to patients. We asked that patients affected by healthcare policy have a seat at the table, to bring expertise, impactful data, and our experience to bear on decisions that impact our access to healthcare. We shared the experience of individuals with Familial Hypercholesterolemia who have helped to drive research leading to effective treatments to help prevent heart disease, and those who are struggling to get meaningful access to some of those same treatments, whether that’s due to a lack of diagnosis, high costs, or denial of coverage by their insurance provider. The FH Foundation was proud to join the Epilepsy Foundation, the Lung Cancer Alliance, National Alliance on Mental Illness, Cancer Support Community, Association of University Centers on Disability, the Global Liver Institute, and PIPC to help make the voices of patients heard.
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