In addition to our work with state policy, the RARE Foundation submitted comments to the Center for Medicare and Medicaid Services (CMS) about the Interim Final Rule (IFR) that provides states with guidance on implementing community engagement, or ‘work’ requirements for adults with Medicaid.
Our Focus
Over 6 million Medicaid beneficiaries live with a rare disease, but most rare diseases have no specific diagnosis code, so the automated systems states need to use will miss patients who should qualify for exclusions. In the IFR, CMS added more rules and requirements to an already complex process that risks coverage losses, even for those who should be eligible.
We’re asking CMS to use more effective tools to identify rare disease patients for exclusions, preserve self-attestation, stop unnecessary annual reverification for those whose conditions aren’t expected to change, and include patients and advocates in the rollout.
