Dear Members of the Colorado Prescription Drug Affordability Board,
On behalf of Rare Disease Innovations Institute, Inc., I want to express my concern with the Prescription Drug Affordability Board (Board) into the prioritization of selection class criteria for affordability reviews pursuant to Senate Bill 21-175. I am afraid of the harm this bill could cause our already defenseless population of Colorado rare disease patients and families. Rare disease is defined as a disease that affects fewer than 200,000 people in the United States. There are about 10,000 rare diseases with an estimated 25 million to 30 million Americans who are living with a rare disease. Currently only 5% of rare diseases have a treatment so any action to limit innovation on treatments is not acceptable and puts and incredible burden on our rare disease community. The rare disease community should be considered and they should have a voice when considering upper payment limits for other patients.
As a non-profit that focuses on the quality of health and treatment for our rare disease patients, I am afraid this bill will not serve that mission or provide any real hope and help for our rare disease population.
We are so happy to support advancements in research and innovation however the high costs of many of these prescription drugs place an additional burden on top of the strains these families already face. These high drug prices will negatively impact an already challenging quality of life for these patients, caregivers and families. We do not support rare disease being one of the first populations included within this legislation. This legislation should initially be applied to less vulnerable populations of people outside of rare disease. This will be devastating for those patients and caregivers.
We ask that you reconsider this so that additional burdens are not placed on this community.
We look forward to seeing these concerns addressed so that the patients and families in Colorado don’t have to choose between the high costs of drugs versus therapies that are improving the quality of life for them.
Thank you so much for your consideration.
Tara J. Britt
President & Founder
Rare Disease Innovations Institute, Inc.