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Why are FH patients paying a higher price for PCSK9 inhibitor treatment when a lower price is available, and what can we do about it?

Affordable prescription drugs are necessary so individuals can benefit from advances in medicine to treat conditions such as familial hypercholesterolemia. Medical research and innovation make it possible to actually prevent or delay heart disease in people born with FH. All it takes is early diagnosis and treatment.  But can patients afford the treatment?

To make out-of-pocket costs more affordable, two things need to happen:

  1. Pharmaceutical companies need to lower their list prices;
  2. Insurance plans and Pharmacy Benefit Managers (PBMs) who manage their prescription drug benefit need to adopt and use the lower list price to calculate patients’ out-of-pocket costs.


In the case of PCSK9 inhibitors (PCSK9is), the first step has been taken, but many plans and PBMs have yet to take the second step. The reasons why are complicated and point to the need for more transparency in our healthcare system.

The US Senate Finance Committee held a hearing on April 9 aptly named “Drug Pricing in America: A Prescription for Change Part III.” the Family Heart Foundation attended the hearing because we have been advocating for changes to the pricing and rebate system.

The Senators heard from the leadership of Pharmacy Benefit Managers (PBMs) Cigna, OptumRx, Prime Therapeutics, CVS, and Humana. They asked them to explain their role in the prescription drug delivery system and questioned them about some of the incentives in the system that seem to work against Americans who require prescription drugs to treat chronic conditions, like FH.

The role of PBMs is to manage the prescription drug benefit for insurance plans, including Medicare. PBMs negotiate rebates and discounts on prescription drugs with pharmaceutical companies on behalf of health insurance plans, and to help determine what drugs are covered under those plans, based on clinical effectiveness and cost. They also coordinate care, manage drug utilization, and institute drug adherence programs.

Several Senators, including Senator Wyden (OR) and Senator Menendez (NJ) asked specifically about an issue that directly affects those with FH – why are some patients paying a higher price for PCSK9 inhibitors (PCSK9is), when a lower price is available?

When PCSK9is (Repatha and Praluent)t were approved by the Food and Drug Administration (FDA) as a new class of cholesterol-lowering drugs to treat FH in 2015, the Family Heart Foundation was hopeful that these therapies would help prevent heart disease in people with FH. But the initial price of PCSK9is was high. Doctors and patients balked at the price. PBMs and insurance plans restricted access, citing the high cost. Many patients walked away at the pharmacy counter due to high out-of-pocket costs.

However, when the price dropped by 60% at the end of 2018, for most patients, nothing changed.

In fact, the drug makers did not just offer a bigger rebate, they actually lowered the list price. Exactly what the Administration, Congress and the American people have asked for – lower drug prices and price transparency.

Many of the insurance plans and PBMs have kept the higher price and the rebates, instead of moving to the lower priced option. As a result, many patients, especially those with Medicare Part D plans, are still paying out-of-pocket co-insurance based on the higher price. Others who have commercial insurance will run out of copay assistance before the end of the year, because their copay is based on the higher price.

Debbie - story of lowering cost for PCSK9iTake Debbie Hileman, an office administrator from Grand Tower, IL. Debbie had coronary artery bypass surgery at age 57, caused by FH. She has already lost 2 of her 4 sisters to FH. As Debbie told us, she is not ready to die.

For people with FH, lifelong treatment to lower LDL cholesterol is essential, and critical for someone like Debbie who already has heart disease. The first line of treatment is a generic statin, but that was not enough for Debbie. Even on a statin, her LDL cholesterol is over 400 mg/dL – more than five times the recommended level. Her doctor prescribed a PCSK9i to help her reach her treatment goal and hopefully prevent a heart attack.

When Debbie asked the Family Heart Foundation for help in January, her PCSK9i cost her $460.58 per month out-of-pocket on her Medicare Part D plan – about 40% of the higher list price. That is unaffordable. It is also just $330 a year short of the total cost at the lower price. It seems Debbie was subsidizing her plan, which was also receiving a rebate from the drug manufacturer.

We began speaking to everyone involved to understand how it could be that Debbie was not getting the lower price that had been available for months.

We learned that patients and their healthcare providers (HCPs) have to jump through hoops to get the lower priced version of the same brand name drug. Some PBMs ask HCPs to resubmit a Prior Authorization (PA) request to document the need for the lower priced drug, even though the drug was approved at the higher price. One large insurance plan advised the Family Heart Foundation that patients would need to go to their pharmacy to ask for the lower priced version of the drug themselves. Another plan told us doctors would have to specify the lower priced National Drug Code (NDC) on their prescription.

Based on what we learned, Debbie went to her pharmacy with the new NDC and asked for the lower priced version of the drug. In one hour, Debbie successfully lowered her monthly out-of-pocket expense to $118. (A list of the new NCD codes are here.

It is baffling that the lower price is not automatically and expeditiously adopted for all.

the Family Heart Foundation has learned that it takes more than lower drug prices to lower costs for patients. The Senate Finance Committee hearing revealed some of the reasons why.

  1. The PBMs choose the lowest net cost and pass the savings on to their clients. To be clear, their clients are not the patients who take these drugs; clients are the insurance plans and employers, unions, and Medicare who pay for those plans. The savings from rebates and patient cost sharing (your copay or coinsurance) are often used to lower premiums for everyone. Plans may choose the higher list price because even if they pay $14,000, they get a rebate from the manufacturer, and a copay based on the higher price from the patient to offset that cost.
  2. One PBM answered that they would have adopted the lower price if they had enough notice. Since they had already budgeted based on the original price and rebates, they will not be able to adopt the lower list price until 2020. Individuals with FH cannot afford to wait until 2020 to lower their costs by hundreds of dollars per month.
  3. Some plans and PBMs have adopted the lower list price or do pass the rebate on to the patients taking the drugs.


the Family Heart Foundation is working to make sure individuals with FH and their healthcare teams know that there is a lower priced option they can ask for at the pharmacy or in the prescription. But it can’t be left up to patients and their healthcare providers.

We need the entire convoluted prescription drug delivery system to take action now to adopt the lower price PCSK9is and reduce the out-of-pocket costs for FH patients. This includes pharmaceutical companies, pharmacies, PBMs, wholesalers, insurance plans, and the employers who pay for these plans. We are also asking Members of Congress and the Department of Health and Human Services, including the Centers for Medicare and Medicaid Services, to take action to make sure all patients benefit as soon as possible from the lowest available list price for prescription drugs in the form of affordable out-of-pocket costs. Individuals with FH can’t wait – we need action now.



Cat Davis Ahmed is the VP for Policy and Outreach for the Family Heart Foundation, a non-profit research and advocacy organization dedicated to helping individuals and families with FH to live longer, healthier lives. the Family Heart Foundation represents the 1.3 million Americans born with Familial Hypercholesterolemia, 90% of whom are not yet diagnosed.

2 Responses to “Why are FH patients paying a higher price for PCSK9 inhibitor treatment when a lower price is available, and what can we do about it?”

  1. Gloria Brucato

    I am currently on an insurance plan provided by my employer and only pay a copay of $5 a month for Repatha. I will be on Medicare in a few months and my copay will be $547 a month. This just does not make sense to me.


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