Prime Therapeutics forecasts cystic fibrosis spending could double in 2019

Integrated medical and pharmacy real-world data reveals new cystic fibrosis modulator treatments plus broader use could drive premium hikes

March 26, 2019

EAGAN, Minn. – Recently approved cystic fibrosis (CF) treatments and new approvals for additional ages or mutations could double the spending on CF treatments in 2019, according to new research by Prime Therapeutics LLC (Prime), a pharmacy benefit manager (PBM) serving 23 Blue Cross and Blue Shield plans nationally. These added costs could result in higher premiums for members.

About 30,000 people in the U.S. have CF, a progressive genetic disease that damages the lungs and digestive system. Three treatments – called cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies – have been approved by the U.S. Food and Drug Administration (FDA). Kalydeco® (ivacaftor, IVA), Orkambi® (lumacaftor/ivacaftor, LUM/IVA), and Symdeko® (tezacaftor/ivacaftor, TEZ/IVA) are designed to correct the malfunctioning protein made by the CFTR gene. Together they are indicated to treat 60 percent of CF mutations at an annual cost of about $300,000 per member. FDA approvals broadening CFTR modulator use and a triple combination product are anticipated by the end of 2019.

Prime researchers analyzed pharmacy and medical claims data for 15 million commercially insured members and identified 2,147 (14 per 100,000) people with a CF diagnoses. Of these members, 1,288 (60 percent) are eligible to receive a modulator based on a projection from the CF Foundation.¹ Of the 1,288 eligible members, Prime identified 695 members with a modulator claim, resulting in a 54 percent treatment rate among eligible members. With just over half of the estimated eligible members receiving modulator therapy, it is likely modulator use will increase. Modulator costs increased from $0.08 per member per month (PMPM) in January 2015 to $0.96 PMPM in November 2018, driven by increasing use.

Based on historical utilization trend and an increase in the current treatment rate, researchers concluded modulator costs could reach $1.21 PMPM by December 2019. If the treatment rate among eligible members increases to 100 percent, costs could increase to as much as $2.07 PMPM by the end of 2019.

“With the use of cystic fibrosis treatments continuing to rise and new products coming in the class, it is becoming increasingly more critical to evaluate if they are priced appropriately according to the value they provide,” said Catherine Starner, PharmD, senior principal health outcomes consultant, Prime Therapeutics. “Plan sponsors should use this research to assess if providing clinical programs to closely manage appropriate use can help and whether negotiating value-based contracts with pharmaceutical manufacturers can help recoup costs if the treatments don’t improve health outcomes.”

Prime researchers will present the analysis at the Academy of Managed Care Pharmacy’s (AMCP) Managed Care & Specialty Pharmacy 31st Annual Meeting, March 25-28 in San Diego, CA.


  1. Cystic Fibrosis Foundation. 2017 Cystic Fibrosis Foundation Patient Registry Highlights. https://www.cff.org/Research/Researcher-Resources/Patient-Registry/2017-Patient-Registry-Annual-Data-Report.pdf. Accessed July 20, 2018.
Download AMCP research poster

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