The new administration and Congress are re-examining the United States health insurance system with the goal of repealing the Affordable Care Act, and replacing it with a new system.
Before the Affordable Care Act was enacted in 2010, rare disease patients faced discriminatory insurance practices due to their pre-existing condition. Patients were denied coverage to vital therapies and specialists, and were often denied coverage altogether. Even when they could find coverage, insurers often put annual or lifetime benefit caps on their coverage, essentially removing all coverage once they hit a particular cost ceiling.
The Affordable Care Act banned these practices by forbidding insurers from discriminating against individuals with pre-existing conditions, outlawing annual and lifetime caps, and putting in place many other patient protections.
NORD is coordinating with rare disease patient organization partners on strategy, and conducting meetings on the Hill to ensure coverage protections for rare disease patients remain. Thank you for sharing your experience with us so that we can be best suited to advocate on your behalf.
