The EveryLife Foundation for Rare Diseases submitted comments to the Oregon Health Authority urging them to remove concerning elements of their 1115 Waiver Application designed to make changes to their state’s Medicaid program. If approved by the Centers for Medicare and Medicaid Services, these concerning changes would allow Oregon to deny coverage for treatments approved via the accelerated approval pathway and allow them to implement other restrictive formularies for adult beneficiaries.
In the letter, EveryLife stressed that “meaningful policy solutions must focus on the total cost of patient care. Policy reforms that focus on only one aspect of healthcare costs and that threaten access to the few treatment options available to those with rare diseases will result in negative repercussions for patient health and have detrimental economic outcomes for families and society overall. We urge OHA to consider the extensive unmet needs and scientific challenges inherent in the rare disease community and ensure policy solutions reflect these complexities by removing Strategy 3 from the 1115 Waiver Extension and investing in long-term actions that will support future policy innovation to ensure the sustainable delivery of life-saving treatments to those most vulnerable Oregonians.”
The EveryLife Foundation, along with our Community Congress partners, continues to monitor proposals that could threaten access to safe and effective therapies such as those approved via the accelerated approval pathway and will actively engage in addressing any immediate threats to access while working with all stakeholders to identify long-term policy solutions. Read the full comment letter here.
