Ensuring Parity through Individualized Care for Rare Disorders

A comprehensive legislative approach to ensuring coverage parity for patients with rare genetic conditions in accessing specialists, medicines, and other necessary items and services within Medicaid. EPICrd was developed by advocacy group leaders from the rare disease community to address challenges in Medicaid access that have a negative impact on treatment.

Access to rare disease therapies must not be hindered

Transformative medical breakthroughs satisfy unmet medical needs and advance standards of care
Patient access to these therapies must be enhanced; provider burden should be reduced
Medicaid prior authorizations and other coverage restrictions deny rare disease patients fair access to rare disease therapies, further exacerbating socioeconomic disparities in healthcare
Medical necessity determinations must be streamlined
Medicaid should not override FDA and providers’ authority and expertise
- FDA approval demonstrates effectiveness
- A doctor’s attestation that a medicine is reasonably likely to work should determine medical necessity

Access to specialty care should be easier

Telehealth for access to rare disease experts
Administration of medicines by out-of-state providers
Access to multi-disciplinary teams

Patients with rare genetic disorders need more than access to medicines

Home infusion therapy and services
Durable medical equipment, supplies, and foods
Home health benefits such as physical and occupational therapies
Healthcare navigators

Get Involved

Join members of the advocacy community in proposing new legislation to provide parity for Medicaid patients with rare diseases. To get started, click on a button below to explore resources or connect with a member of our team.