Recent Prime study finds hereditary angioedema drug therapy costs are unsustainable

Real-world data shows six months of drug cost runs $335,000 or more

April 17, 2020

EAGAN, Minn. – Prime Therapeutics LLC (Prime), a pharmacy benefit manager (PBM) serving 30 million people, evaluated its integrated medical and pharmacy claims data to identify those members new to preventive therapy for hereditary angioedema (HAE). The real-world data showed a $26,000 difference between two commonly used drugs to treat HAE – Haegarda® and Takhzyro® – with both being unsustainable.

HAE is a rare genetic disorder that results in potentially life-threatening swelling of limbs, abdomen, face, tongue or larynx, and evaluated the prescription costs associated with those members. HAE is estimated to affect 1 in 50,000 people in the United States.1

Two relatively new HAE preventative therapies came to market in the past two years; weight-based dosing therapy subcutaneously (SC) administered C1-INH (Haegarda) and fixed-dosing therapy SC lanadelumab (Takhzyro), both are indicated for long-term HAE prophylaxis and were analyzed in the study. Little is known of their real-world use or costs. When analyzing 15 million insured members in Prime’s commercial book of business, researchers found 58 members who fit the study criteria: 1) being new to Haegarda or Takhzyro HAE therapy, 2) using only one preventive HAE medicine, and 3) being continuously enrolled with Prime before, during and after HAE preventative therapy started.

The study evaluated the cost of the two therapies over a 6-month timeframe. Haegarda’s mean cost was nearly $227,000 vs. Takhzyro’s more than $278,000 – a difference of $51,000 (22%). Additional, on-demand drug therapy is sometimes needed at event onset such as swelling of face, throat or intestines. Members taking Haegarda had a mean of $335,000 for on-demand plus their Haegarda therapy, while Takhzyro members’ on-demand therapy plus Takhzyro therapy mean was $361,000. Together, the initial prophylactic and on-demand treatment costs showed Takhzyro was $26,000 more than Haegarda for the 6-month period.

“These study results are meaningful despite the small sample size,” said Kevin Bowen, MD, MBA, principal health outcomes researcher at Prime. “Taking the real-world cost data of both medical and pharmacy claims to evaluate two FDA recently approved prophylaxis HAE drugs is extremely important to help make critical decisions about formulary placement, contracting with manufacturers and the most cost-effective treatment of members. Due to the remarkable expense of these treatments, value-based arrangements and preferred product strategies should be considered.”

The Institute for Clinical and Economic Review (ICER) also reviewed the cost of HAE therapies. ICER’s models found current drugs were priced above the commonly accepted threshold of $150,000 per quality-adjusted life year (QALY).

This gold award-winning research will be presented at the Academy of Managed Care Pharmacy (AMCP) 2020 virtual learning event April 20-24.


  1. National Institutes of Health, National Library of Medicine: https://ghr.nlm.nih.gov/condition/hereditary-angioedema
Download AMCP research poster

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