The FH Foundation is working to ensure your voice, backed up by clinical and real world data, is heard loud and clear in conversations that impact your health.
We are working with patients, doctors, nurse practitioners, policy makers, drug manufacturers and payers to make sure Familial Hypercholesterolemia (FH) is finally recognized and understood as the common, life threatening genetic disorder it is, and that everyone understands the opportunity we have to work together with a common understanding to diagnose early, treat appropriately and ultimately prevent heart disease. With 90% still undiagnosed, the time is now.
The FH Foundation and FH Advocates spoke to the unmet need for additional cholesterol lowering therapies at the FDA in June, citing the CASCADE FH Registry’s finding that even on multiple therapies, many FH patients cannot reach the LDL cholesterol levels their doctors consider optimal given their lifelong exposure and risk.
More recently, the FH Foundation submitted public comments to the Institute for Clinical and Economic Review (ICER). ICER issued a draft report on Effectiveness, Value, and Pricing Benchmarks for PCSK9 Inhibitors for High Cholesterol in September, which has been widely covered in the popular press and discussed at numerous meetings in Washington, DC.
The FH Foundation was concerned that some of the assumptions in the report – such as individuals with FH defined by untreated LDL cholesterol over 250 mg/dL, rather than 190 mg/dL – would re-define FH and negatively impact FH patient access to the care we need, not only for this new class of drugs for those who need them, but for the diagnosis and treatment of FH in general.
Please read the FH Foundation’s public comments correcting those assumptions here: FH Foundation Comments – ICER
Watch Katherine Wilemon here:
If you think this work is important, please make a tax-deductible donation to the FH Foundation. We depend on the financial support of the FH Community – we really cannot do this without you.