Rare Disease Advisory Council

Thank you for your interest in the MO HealthNet Rare Disease Advisory Council. The Council was created by State Statute 208.183.

The advisory council shall serve as an expert advisory committee to the drug utilization review board, providing necessary consultation to the board when the board makes recommendations or determinations regarding beneficiary access to drugs or biological products for rare diseases, or when the board itself determines that it lacks the specific scientific, medical, or technical expertise necessary for the proper performance of its responsibilities and such necessary expertise can be provided by experts outside the board.  “Beneficiary access”, as used in this section, shall mean developing prior authorization and reauthorization criteria for a rare disease drug, including placement on a preferred drug list or a formulary, as well as payment, cost-sharing, drug utilization review, or medication therapy management.  Council nominations are made by the Director of Social Services.  Interested parties may submit their CV to clinical.services@dss.mo.gov.

For the purpose of this advisory council a “rare disease drug” shall mean a drug used to treat a rare medical condition, defined as any disease or condition that affects fewer than two hundred thousand persons in the United States, such as cystic fibrosis, hemophilia, and multiple myeloma.