VIEWPOINT | Congress must fix law discouraging rare disease research

Guest column by Sarah Jones, rare disease research advocate

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 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.

VIEWPOINT | We'll keep losing fight against lethal superbugs if Congress doesn't act