Removing barriers to optimal treatment and care of FH

For 30 years, we have had effective treatment to reduce the risk for early heart disease that has devastated FH families for generations. Yet, as a healthcare system, we have failed to ensure that individuals with familial hypercholesterolemia (FH) are properly diagnosed and treated.

In order to address one of the barriers to diagnosis, the Family Heart Foundation applied for and received two International Classification of Diseases (ICD) 10 codes for for Familial Hypercholesterolemia (E78.01) and Family History of FH (Z83.42).These new codes went into effect in October 2016 and have since provided us with one measurement of how far we still need to go to diagnose all individuals with FH.

Now, we face an even greater challenge of delayed treatment for individuals with FH.

According to analysis conducted by the Foundation on 110,000 individuals diagnosed with the new ICD-10 code for FH, individuals with FH are not being treated with high-dose statins or combination therapy, much less being prescribed PCSK9 inhibitors.


FOCUS Data analysis compared to CASCADE FH® Registry; Oct. 2016 – April 2017


Less than .04% of individuals with FH are on a PCSK9 inhibitor today.

In additional analysis on data through December 2017 including 191,164 individuals with an ICD-10 code for FH, only 1.64% (3,144 / 191,264) have been prescribed a PCSK9 inhibitor.

Additionally, only 915 of the 3,144 who were prescribed a PCSK9i were on therapy as of Dec 2017, which equates to  0.04% of individuals with an ICD-10 diagnosis of FH are on therapy.

Advocating for Change

the Family Heart Foundation is helping individuals navigate their own care and working on the policy front to change the fact that 63% of individuals with FH are being rejected for PCSK9is by their health plan.


Knowles, J. et al. Access to Non-Statin Lipid Lowering Therapies in Patients at High-Risk of Atherosclerotic Cardiovascular Disease. Circulation. 2017;135:2204-2206


The current prior authorization process for this novel lipid lowering therapy has been found to place a heavy burden on healthcare providers and patients as new research published by Jalpa Doshi et. al. in Circulation Cardiovascular Quality Outcomes. Compared to other therapies, prior authorization forms for PCSK9is often require more documentation. The authors note, and we agree, that these challenges are limiting access to PCSK9is even for the most appropriate individuals.

the Family Heart Foundation is committed to educating healthcare providers and insurance companies about the need to differentiate FH and treat it as the high-risk condition we know it as.

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