Access to rare disease specialists needs consideration by lawmakers 

To the editor:  I’m a neurologist at Gillette Children’s and I have an ask for our elected officials that is […]

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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 
Pediatric Neurologist 
Gillette Children’s 

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