Familial Hypercholesterolemia
Time to Act

For 30 years we have had effective treatment to reduce the risk for early heart disease that has devastated FH families for generations, and yet, as a healthcare system we have failed to ensure that individuals with FH have access to care. Now, even with more therapies, individuals with FH are facing new challenges that delay treatment.
Every week the FH Foundation receives calls and emails asking for help working with their insurance company to get approval for treatment prescribed by their doctor to lower their risk of a heart attack or other cardiac event. Sometimes it’s one of the treatments for Homozygous FH (HoFH). Most often it’s for novel PCSK9 inhibitors (PCSK9is). 
Here is one example:
Dan contacted the FH Foundation for help when he was denied a PCSK9 inhibitor by his insurance plan. At age 32, he was just 6 months out from having bypass surgery. His inadequately treated LDL-Cholesterol level of 420 mg/dL had caught up with him too fast. After surgery, he worked hard to lower his cholesterol, making lifestyle changes and taking a maximum dose of a high intensity statin plus ezetimibe. He met all the criteria for a PCSK9 inhibitor according to the FDA label, and then some - both FH and ASCVD, maximum tolerated statin, and his LDL-C was still 165 mg/dL.

He was out of options and turning to an innovative new treatment to help prevent another heart attack or early death. Then, he was denied approval for the PCSK9 inhibitor, a treatment his insurance plan has on the list of drugs it covers. He was told he had to try another statin, further delaying treatment. It's been 3 months since his doctor prescribed the PCSK9 inhibitor. Dan has no more time to waste going down a road to nowhere. The FH Foundation is taking action to resolve this access issue for Dan and for so many others with FH.
The FH Foundation is working individually and on the policy front to change the fact that 63% of individuals with FH are being rejected by their health plan for PCSK9is. 1

New research published in Circulation Cardiovascular Quality Outcomes just last week highlights that the current prior authorization process places a heavy burden on healthcare providers and patients . 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.

Share your access story here .
1 Knowles, J. et al. Access to Non-Statin Lipid Lowering Therapies in Patients at High-Risk of Atherosclerotic Cardiovascular Disease.
FH puts us at severe risk.

In addition to improving access to new risk-reducing therapies, we must do more to improve the prescribing of ALL therapies for 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 too often not treated with high-dose statins or combination therapy, much less being prescribed PCSK9 inhibitors.
FOCUS Data analysis compared to CASCADE FH Registry
Circulation,CIRCULATIONAHA.117.027705.  http://dx.doi.org/10.1161/circulationaha.117.027705
The FH Foundation is educating healthcare providers and insurance companies about the need to differentiate FH and treat it as the high-risk condition we know it as.
Advocating on Capitol Hill
This week, the FH Foundation and 28 volunteer FH Advocates for Awareness headed to Capitol Hill to raise awareness of the needs of individuals with FH and asked members of congress to protect access to personal healthcare and the privacy of health information.

Each advocate asked his or her representatives to not support H.R. 1313, the Preserving Employee Wellness Programs Act. This legislation would fundamentally undermine the privacy provisions of the Genetic Information Nondiscrimination Act (GINA) and the Americans with Disabilities Act (ADA) by allowing employers to ask employees invasive questions about their and their families' health, including genetic information. The FH Foundation believes that this could have devastating impact on individuals with FH and family members, since FH is a genetic condition.
Please share our social media posts throughout the month to help raise awareness for FH as the most common genetic condition that causes early heart disease.