In 2023 the Maryland Legislature signed into law Senate Bill 188/ House Bill 302- Rare Disease Advisory Council, for the purpose of establishing the Rare Disease Advisory Council to study and make recommendations on matters relating to individuals with rare diseases in the State.
The Council’s tasks include:
- Convene public hearings, make inquiries, and solicit comments from the public to assist the Council with a first-year survey of the needs of individuals with a rare disease,, caregivers, and health care providers in the state;
- Consult with experts on rare diseases to develop policy recommendations to improve patient access to and the Quality of rare disease specialists, affordable and comprehensive health care coverage, relevant diagnostics, timely treatment, and other needed services;
- Research and make recommendations to state agencies and insurers that provide services to individuals with a rare disease on the impact of prior authorization, cost-sharing, tiering, or other utilization management procedures on the provision of treatment and care for patients;
- Establish best practices and protocols to include in state planning related to natural disasters and public health emergencies or other emergency declarations to enable continuity of care for rare disease patients and ensure that safeguards against discrimination for rare disease patients are in place;
- Evaluate and make recommendations regarding coverage of prescription drugs for rare disease patients, including patients with private health insurance coverage and patients enrolled in the Maryland Medical Assistance Program, to improve coverage of diagnostics, and to facilitate access to necessary health care providers with expertise in the treatment of rare diseases;
- Publish a list of existing and publicly accessible resources on research, diagnosis, treatment, and education relating to rare disease on the Council’s webpage;
- Identify areas of unmet needs for research that con inform future studies and reports by the Council;
- Identify and distribute educational resources for health care providers to foster recognition and optimize treatment of rare diseases in the state; and
- Research and identify best practices to ensure continuity of care for rare disease patients transitioning from pediatric to adult care.
