Bridging the Gap: EPICrd and the Fight for Equitable Healthcare Access for the EB Community
Exciting strides are being made in the world of Epidermolysis Bullosa (EB) with the U.S. FDA approval of two therapies. However, amidst this progress, our community continues to face challenges, particularly in accessing care. Insurers – both public and private – often limit or delay access to the treatments we need.
In response to this urgent issue, debra of America, alongside two other leading advocacy organizations, have joined forces to develop a proposed Medicaid legislation called EPICrd – the Ensuring Parity through Individualized Care for Rare Disorders Act – designed to bridge the gap in Medicaid coverage for people with rare genetic conditions.
Within Medicaid, EPICrd would, among other things:
- Provide coverage of FDA-approved therapies;
- Limit prior authorization and other coverage restrictions;
- Leave determination of medical necessity in the hands of healthcare providers;
- Facilitate access to multi-disciplinary teams of specialists, including telehealth;
- Provide coverage of other medically necessary items and services, including durable medical equipment, home infusion, medical foods, and medical supplies, that are necessary for care.
We are thrilled to announce that we now have a lead sponsor for the legislation: Congressman August Pfluger, representative of the 11th district in Texas, whose support signifies a pivotal step in securing equitable healthcare for our EB Community.
This initiative stands as a cornerstone of debra's mission to improve the lives of those impacted by Epidermolysis Bullosa (EB) — “The Worst Disease You’ve Never Heard Of.” With each step forward, we reaffirm our commitment to ensuring that no one in our community is left behind.
