News Release

Family Heart Foundation study shows significant health disparities in treatment of familial hypercholesterolemia

Findings presented at AHA Scientific Sessions

Reports and Proceedings

Family Heart Foundation

CHICAGO, November 7, 2022 – The Family Heart Foundation, a leading research and advocacy organization, shared results from an analysis of its large U.S. Family Heart DatabaseTM showing significant disparities exist in the treatment of familial hypercholesterolemia (FH) among racial groups, and by income and education levels. A real-world data analysis of more than 300 million individuals showed appropriate lipid-lowering therapy is more often prescribed for people with FH who are White, male, and have higher income, or have advanced education, leaving many others undertreated. The findings are being presented at the American Heart Association Scientific Sessions on Nov. 7 in Chicago in a poster titled, “Using Healthcare Claims Data and Machine Learning to Identify Health Disparities for Individuals with Diagnosed and Undiagnosed Familial Hypercholesterolemia.”

“Individuals with FH are at very high risk of premature cardiovascular events and require early and intensive lipid-lowering therapy, however, most individuals fall far short of receiving adequate care,” said Mary P. McGowan, M.D., Chief Medical Officer, Family Heart Foundation, and co-author of the study. “These findings highlight the significant unmet need for improving equity and providing all individuals with FH an opportunity for cardiovascular risk reduction.”

The observational study included patients diagnosed with FH and those likely to have FH but not yet diagnosed (probable FH). Probable FH patients were identified by the Family Heart Foundation’s validated FIND-FH® machine learning model. Filled prescriptions for statins, ezetimibe, and PCSK9i, as well as age, education, income, race/ethnicity, and gender were assessed. Among more than 77 million individuals analyzed in this dataset, 280,426 had an FH diagnosis (51% female, 79.5% White, 11.8% Black, and 8.7% Hispanic) and 899,027 had probable FH (48% female, 78.7% White, 12.9% Black, and 8.5% Hispanic).


Key Findings within Both Diagnosed and Probable FH Groups:

  • Compared to Blacks, Whites were 6 to 30% more likely to receive ezetimibe, PCSK9i, or the combination of statin, ezetimibe, and PCSK9i.
  • Males were 46 to 48% more likely to receive high-intensity statins compared with females.
  • Individuals with a household income of $100,000 and above were 30 to 50% more likely to receive ezetimibe, PCSK9i, or the combination of statin, ezetimibe and PCSK9i compared with individuals with household income less than $49,000.
  • Diagnosed FH patients with a college degree were 51% more likely to receive the combination of statin, ezetimibe and PCSK9i compared to those with a high school education or less.

The data analysis was performed on the Family Heart Database, comprised of diagnostic, procedural, and prescription data from claims and/or laboratory information for more than 300 million individuals in the U.S.


About Familial Hypercholesterolemia

Familial hypercholesterolemia (FH) is a common life-threatening genetic condition that causes high cholesterol from birth. As many as one in 250 people are estimated to have FH. Untreated, FH leads to early heart attacks and heart disease. People with FH have a high amount of low density lipoprotein (LDL) or “bad cholesterol” due to a mutation in one of the genes that controls the way cholesterol is cleared by the body. As a result, cholesterol accumulates in the bloodstream and can ultimately build up in the walls of the arteries, which can lead to problems such as heart attacks and strokes in young adults and even children. Because FH is genetic, when one individual with FH is diagnosed, it is important that all family members are screened for FH.


About the Family Heart Foundation

The Family Heart Foundation is a nonprofit research and advocacy organization. The Foundation is a pioneer in the application of real-world evidence, patient-driven advocacy, and multi-stakeholder education to help prevent heart attacks and strokes caused by FH and elevated Lipoprotein(a), or Lp(a), two common genetic disorders that have an impact across generations. The Family Heart Foundation conducts innovative research to break down barriers to diagnosis and management of inherited lipid disorders; educates patients, providers, and policy makers; advocates for change; and provides hope and support for families impacted by heart disease and stroke caused by FH, HoFH, and high Lp(a). The organization was founded in 2011 as the FH Foundation. For more information, visit and follow us on TwitterFacebookInstagram and LinkedIn.

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