Washington, D.C., July 17, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement after responding to the Administration’s “HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”:
“Yesterday, NORD officially responded to the Trump Administration’s call for commentson their ‘Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs’. We are pleased to offer the rare disease patient’s perspective to the Administration as they contemplate actions aimed at lowering drug prices and costs to consumers.
There are several proposals within the Blueprint that may help individuals with rare diseases access lower cost treatments, including additional education on biosimilars and the prohibition of pharmacy gag rules. However, there are also proposals that could raise costs for patients and place additional barriers to accessing medically necessary care, such as shifting therapies from Medicare Part B to Part D, and allowing Medicare plans to shift additional costs to consumers.
While we applaud the Administration for tackling this very difficult issue, we once again ask them to ensure lowering costs for patients while maintaining medical innovation remains at the very core of their initiative. We hope to continue to work with the Administration as it refines these proposals and considers additional ways to lower costs for our community, and look forward to continuing to represent rare disease patients in these conversations.”
