Bill > S01287

This bill establishes a Rare Disease Advisory Council within the public health law to address the needs of individuals with rare diseases, defined as conditions affecting fewer than 200,000 people in the United States. The council, comprised of at least seventeen members with diverse expertise including healthcare professionals, researchers, insurance and biopharma representatives, patients, and caregivers, will be responsible for identifying best practices to improve awareness and diagnosis, evaluating barriers to accessing treatment, and developing recommendations for the legislature and governor. The council will also focus on incorporating rare disease patient needs into emergency preparedness plans, soliciting public input, and advising on legislation and regulations impacting the rare disease community. Furthermore, it will provide input to the Medicaid drug utilization review board regarding treatments for rare and emerging therapies, though it will not have authority over Medicaid decisions. The council will produce an annual report detailing its findings and recommendations, which will be publicly accessible and incorporated into state health improvement plans. The bill also outlines the council's operational structure, including meeting requirements, term limits for members, and the ability to accept funding to support its initiatives, with the act taking effect 30 days after becoming law.

Budget and Finance, Health and Social Services

https://www.nysenate.gov/legislation/bills/2025/S1287