“Families affected by rare diseases represent a medically disenfranchised population that falls through the cracks of every healthcare system in the world.”
-Abbey Meyers, mother of a child with a rare disease and founder of NORD (National Organization for Rare Disorders)
The newly formed state agency, the Rare Disease Advisory Council (RDAC) is charged with providing advice on policies, access, equity, research, diagnosis, treatment, and education related to rare diseases. The Minnesota Council on Disability is proud to partner with RDAC.
At our Legislative forum, citizen advocate Anne St. Martin, RDAC Executive Director Erica Barnes, and Representative Liz Reyer called for changes to insurance plans to improve care for people with rare diseases (Rare Disease Insurance Access [YouTube]). Executive Director Barnes shares an update on this policy initiative:
Individuals diagnosed with rare diseases experience many barriers when seeking care in the healthcare system. Indeed, the barriers often begin prior to receiving a diagnosis. The average individual living with a rare disease:
- Visits eight healthcare professionals
- Is misdiagnosed two to three times
- Waits between seven and eight years before getting diagnosed
Many rare diseases have only a handful of specialists with the requisite knowledge needed to provide care. This is why the MN Rare Disease Advisory Council is proud to support the “network access bill,” HF384/SF1029.
The network access bill will require health plans to allow individuals with rare diseases to be treated by a specialist regardless of network status and without imposing an out-of-network fee. This bill has the potential to shorten the diagnostic journey and save both families and the healthcare system the costs of unnecessary visits that do not result in a diagnosis. The bill has been heard in both the House Health Finance and Policy Committee and the Senate Health and Human Services Committee with bi-partisan support in both chambers. RDAC is thankful for the patient advocates who testified in support of the bill, sharing their own lived experience of the difficulties they faced when attempting to get to the appropriate care.
February 28 was Rare Disease Day. As a reminder, Maureen Alderman, RDAC Council Member shared her and her daughter Caroline’s journey, People with Rare Diseases Deserve Recognition and Support.