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Hemophilia Education for Managed Care and Payer Professionals

Latest Expert Interview

Copay Assistance and Accumulator Adjustment Programs

For patients with complex, chronic conditions like hemophilia, determining the right specialty drug therapy can be a long and difficult journey. Factor replacement products are life-saving specialty drugs with no generic alternatives. Patients with severe hemophilia (FVIII and FIX deficiency) typically infuse factor products prophylactically to prevent bleeding episodes that can lead to progressive morbidity. Maintaining access and promoting adherence for patients is vital to improving outcomes and managing the total cost of health care.

  • Prescription abandonment is highest among specialty drugs featuring a deductible as a component of pharmacy coverage
    • Nearly a third of patients abandon prescriptions for specialty drugs when there is a deductible, versus only 9% for prescriptions for traditional pharmaceuticals for plans with no deductible1
    • In 2016, a significant proportion of patients were enrolled in high-deductible health plans (HDHP), including 50% of those with directly purchased plans and nearly 40% of those with employer-based plans2
  • Patients with hemophilia may rely on copay assistance programs to mitigate the financial burden of cost-sharing
    • Currently, copay assistance programs are offered by all manufacturers of clotting factor products and ensure that patients can afford their specialty drug therapies
  • Certain plan sponsors have recently begun to use copay accumulator and copay maximization programs that do not count copay assistance from a manufacturer towards a patient’s deductible or out-of-pocket maximum obligations
    • Some managed care decision makers have asserted that copay assistance removes financial incentives for members to choose lower-cost drugs; however, factor replacement products are life-saving therapies with no lower-cost or generic alternatives4
    • These copay accumulator and maximization initiatives can negate the benefits of copay assistance programs and reintroduce financial barriers to care for individuals with bleeding disorders


1. IMS Health. Medicines Use and Spending in the US: A Review of 2016 and Outlook to 2021. April 2017.

2. Cohen RA, Zammitti EP. High-deductible Health Plans and Financial Barriers to Medical Care: Early Release of Estimates From the National Health Interview Survey, 2016. Available at:

3. Dafny LS, et al. N Engl J Med 2016; 375:2013-2015.

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Q1: What best describes your primary role?

Q2: Approximately how many patients with hemophilia are being managed in your plan or practice setting?

Q3: How do you perceive the impact of copay accumulator adjustment and/or maximization programs as they pertain to hemophilia and other inherited bleeding disorders?

Q4: Which of the below topics do you most need further information on?

Q5: If your organization has a program addressing copay assistance, how many of your plan members have provided feedback or voiced concerns regarding coupons not being applied to their copay accumulator?

Advisory Board

Jennifer Maahs, RN, PNP, MSN

Nurse Practitioner
Indiana Hemophilia and Thrombosis Center

Steven W. Pipe, MD

Director, Division of Pediatric Hematology and Oncology
Pediatric Medical Director, Hemophilia and Coagulation Disorders Program
University of Michigan

Marion Koerper, MD

Professor Emerita on Recall
Department of Pediatric Hematology
School of Medicine University of California, San Francisco
(UCSF) School of Medicine
Medical Advisor
National Hemophilia Foundation

Diane J. Nugent, MD Chair, Hematology

Medical Director, Hematology and Blood and Donor Services
Division Chief, Hematology
Children’s Hospital of Orange County

Celynda G. Tadlock, PharmD, MBA

(Formerly) Vice President Pharmacy Business Development, Aetna
President, Coventry Prescription Management Serivces, Inc.