Flawed drug pricing approach fails to meet rare disease patient needs
WASHINGTON — Patients Rising Executive Director Terry Wilcox today released the following statement regarding the Institute for Clinical and Economic Review’s (ICER) white paper, “The Next Generation of Rare Disease Drug Policy: Ensuring Both Innovation and Affordability”:
“Patients Rising is pleased to see that ICER recognizes the substantial unmet need for many rare and ultra-rare disease patients and we are pleasantly surprised that they acknowledge the important role Orphan Drugs have played in providing treatment options.
Where ICER continues to fall short is prioritizing a radical ideology on drug pricing over the needs of patients, advancing science, and encouraging medical innovation. Rather than criticizing evidence generation, the health care community must recognize that rare and ultra-rare disease patients have unique challenges that require collaboration from all stakeholders, along with flexibility and creativity to learn as much as possible about potential treatments and the underlying disease that ails these patients.”