Finding the Nexus Between Patient and Payer Needs in Rare Disease

4:15 PM - 5:15 PM, Wednesday, June 5, 2019 ・ 106AB, Level 100
Given the relatively high cost of rare disease treatments, payers play an increasingly important role in facilitating patient access. Yet, payer goals can differ widely from the objectives of the patient. Payers are often looking for hard data to show “efficacy” around the support they cover, while patients may find that relatively small changes to improve everyday quality of life are far more valuable. This panel will bring together a payer representative and a patient advocate in the rare disease space to share perspectives on their differing needs and metrics for success. Moderated by a clinical trial expert, panelists will explore how these unique perspectives can meet on common ground and what data should be captured within clinical trials to satisfy the needs of payers and patients.
Rare Disease Parent, Caregiver, Patient Advocate, Author & Founder
Texas Rare Alliance
Chief Executive Officer
Academy of Managed Care Pharmacy (AMCP)
Global Vice President of Evidence, Market Access, & Pricing Department
CSL Behring