Familial Hypercholesterolemia (FH)

Ask the Pharmacy – Are you getting the lowest cost for your PCSK9 inhibitor? The manufacturers of both PCSK9 inhibitors, Praluent and Repatha, have lowered the list price for these cholesterol-lowering treatments by 60% to $5,850 per year. As we reported in February, the FH Foundation continues to hear from individuals with FH who are on commercial and Medicare Part D plans that they are not all receiving the lower price and as a result still face higher out-of-pocket costs for their PCSK9 inhibitor.   The National Drug Codes (NDC) for the lower price for both products are now available.  It’s not a “given” that individuals with FH will benefit from the lower list price unless they ask for it. The FH Foundation has spoken to several insurance plans who recommend that individuals work with their pharmacy directly to ask for the lower price as an interim solution.

How To Ask for the Lower Drug Price

The NDC, or National Drug Code, is a unique 10-digit identifier for all prescription drugs. Currently, there are NDC codes both at the original list price and the new lower list price for both PCSK9 inhibitors. If you are an individual with FH taking a PCSK9 inhibitor or have patients on a PCSK9 inhibitor (this is especially important among Medicare patients) the individual can: Contact the pharmacy and ask if the out-of-pocket costs would be lower on the new NDC code. Consider going to the local pharmacy and "shopping around" for the lower cost. Local pharmacies may now be able to fulfill PCSK9 inhibitor prescriptions. In case of a problem, or to share success, contact the FH Foundation. The FH Foundation has put together this list of the lower-priced NDC codes:

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Debbie's Story Debbie has both FH and ASCVD. She needs a PCSK9 inhibitor on top of her statin and ezetimibe to get her LDL Cholesterol down from over 400 mg/dL. She was paying $460 per month out of pocket for her PCSK9 inhibitor. This was unaffordable, and she asked the FH Foundation for help. We gave her the new National Drug Codes and suggested she contact her pharmacy to ask for the lower price. She did. The pharmacy added the new code. She is now paying $118 out of pocket - a $342 per month savings!!!

Advocating for Patient-centric Care

Affordability is the difference between taking a medication or not. With FH, it can be the difference between preventing another heart attack or not. These are life and death choices. FH can't wait for insurance plans and pharmacies to catch up with the manufacturers' lower prices, or for patients to have to take care of this on their own. We need change now. The FH Foundation believes it should not be up to patients to ask for a lower price when one is available. This is a short-term fix for a problem that needs a more systematic solution. The FH Foundation has reached out to the Department of Health and Human Services and to members of Congress for their support to ensure that when drug prices go down, patients taking those drugs see the benefits right away. Join the effort by contacting us at at (626)583-4674 or emailing info@theFHfoundation.org ! Sincerely,

Cat Davis Ahmed Vice President, Policy and Outreach

www.theFHfoundation.org