To the editor:
I’m a neurologist at Gillette Children’s and I have an ask for our elected officials that is near and dear to me and the families that we treat. I’m asking them to support the inclusion of SF 1029/HF 384 in the Senate and House HHS omnibus bills. This legislation increases access to the right specialist for the diagnosis, monitoring, and treatment of a rare disease.
Rare diseases are often complex, chronic, progressive, degenerative, and life-threatening. Many rare diseases affect several aspects of the body, requiring care from different types of specialists. Access to a provider that has the knowledge and experience to obtain a correct diagnosis or prescribe the correct course of management or treatment is essential for rare disease patients.
This legislation has the potential to reduce the time to diagnosis (from 7-8 years on average), provide cost savings to both the health care system as a whole and to individual patients and their families, and most importantly increase timely and appropriate access to care for rare disease patients.
Tim Feyma, MD