Public Comment & Letters of Support
Letter of Support
Providing Realistic Opportunity to Equal and Comparable Treatment (“PROTECT Rare”) Act
The bill will build on existing criteria for medically necessary care so that Medicare and Medicaid will be able to consider clinical guidelines and peer-reviewed literature to assess coverage of rare disease treatments. Importantly, the bill does not provide ‘special treatment’ for rare diseases; rather, it levels the playing field for access to those living with more common conditions.
Letter of Support
Minnesota Department of Health’s application for the Sickle Cell Data Collection Program grant (CDC-RFA-DD-23-0002)
Robust and comprehensive data collection is critical to improved care for rare diseases like sickle cell. This grant represents a significant opportunity for the Minnesota Department of Health, the Minnesota Sickle Cell Collaborative, other stakeholders, and the community to collaboratively implement a statewide SCD surveillance system.
Letter of Support
Minnesota State Legislation SF 2744 that appoints the Council to the advisory committee of the Prescription Drug Affordability Board
The development and availability of transformative treatments for rare diseases poses both an incredible opportunity and an enormous challenge for the state of Minnesota. RDAC inclusion on the PDAB ensures that rare disease drug development and research is not restricted nor held to the same standards as common diseases while at the same time sustainable reimbursement models that balance value and cost are considered.
Public Comment
Accelerated Approval Drugs contained in Oregon’s 1115(a) Demonstration Waiver
MNRDAC believes that the restrictions on drugs approved through the FDA’s Accelerated Approval Pathway in this proposal will significantly impede access to medically necessary treatments for rare disease patients who are enrolled in Oregon’s Medicaid program and exacerbate inequities that already exist for the rare disease community related to the availability of treatments.
Letter of Support
David J. Tomassoni Center for Innovation in ALS Research and Care across Minnesota
The Tomassoni Center will provide a cost-effective mechanism to avoid administrative replication and leverage the strengths of each institution/investigator on a statewide level, while also enabling the exponential advancement of both research and clinical care that inevitably arises from collaboration and sharing of ideas.