RDCC Sends Letter of Support for Four Rare Disease Bills to Minnesota State Legislators and Expresses Concern for Fifth Bill that Threatens Drug Development 

The RDCC has shared a letter with Minnesota State legislators in support of four new bills that have the potential to better the lives of those living with a rare disease. The work being done in Minnesota shows the important impact state-level policy can have on rare disease drug development, both in an individual state and beyond.

  • The first bill would extend funding for Minnesota’s Rare Disease Advisory Council (RDAC) through 2027, allowing the Council to continue its work in identifying the unmet needs of the rare disease community and ideating a strategic path forward. 
  • The second bill would ensure that a provider with rare disease expertise is involved in making decisions that impact rare disease patients about the state’s Medicaid program. 
  • The third bill would allow patients with rare diseases greater access to out-of-network specialists, bringing the best care possible to more patients. 
  • The fourth bill would make rapid whole genome sequencing (rWGS) more accessible for critically ill patients under 21 years-old, which has the potential to accelerate diagnosis and identify treatments quicker. 

These four bills will have an immediate and lasting impact on Minnesotans facing a rare disease. At the same time, we urge the legislature to reject a new proposal to create a Prescription Drug Affordability Board (PDAB) in Minnesota. A PDAB would hinder the development of, and access to, existing and future rare disease therapies and would significantly undermine the meaningful work being done to bring more treatments to rare disease patients.

Click here to download and read the letter sent to the Members of the Minnesota Legislature.