Guest Column by Sarah Jones

Congress Must Fix a Law That's Discouraging Rare Disease Research

For those of us diagnosed with a rare disease, the Orphan Drug Act of 1982 has been a lighthouse of hope for a perilous journey. The ODA recognized the lethal reality of research into treatments for people like me. Without treatment, 80 percent of people with my disease would be dead within five to eight years.

Fast forward to 2022 on Capitol Hill, where lawmakers were hastily working out the final details of the Inflation Reduction Act. During these efforts, lawmakers introduced two major disincentives for research into treatments for rare diseases. The health and lives of many rare disease patients are now riding on Congress recognizing and fixing these errors.

I received my personal bad news about four years ago, when my wife and I got back from a bucket list trip to Molokai feeling just awful. After an extensive and brutal yearlong diagnostic process consisting of 57 doctor, ER, and hospital visits, the result was in: a rare autoimmune disorder that causes inflammation of blood vessels. It's known as EGPA, or eosinophilic granulomatosis with polyangiitis.