Since 1948, NHF has worked to improve medical care, services, education, and the safety and surveillance of blood and blood products. We’ve made tremendous progress since then. People with bleeding disorders in the U.S. have access to one of the best models of coordinated and comprehensive care through hemophilia treatment centers (HTCs), a model replicated all over the world and by several other disease groups. And though this community has undergone some dark periods, we’ve emerged with safe and effective life-saving treatments that have given future generations options their parents and grandparents never had.
Unfortunately, not everyone has the same access to care and treatment. For many individuals with bleeding disorders and their families, it has become an increasingly difficult struggle to get and maintain adequate insurance. While it is particularly difficult to secure insurance outside of a large group health plan, most individuals with bleeding disorders face insurance policies that are inadequate to cover their basic needs, are too expensive, or include restrictions such as lifetime caps and pre-existing exclusion clauses that allow the insurer to not have to pay for the individual’s care.
We have a chance to change the existing system to prevent insurers from denying health coverage to those who need it most: people with hemophilia and other bleeding disorders, and other chronically ill individuals. Although NHF has not endorsed any specific legislative proposal, our public policy team is working to shape the policies that most affect the bleeding disorders community. Specifically, we are working to ensure that health reform legislation recognizes the specialized needs of individuals with rare diseases and includes:
- Private market insurance reforms including the elimination of lifetime caps and pre-existing conditions clauses;
- Provisions to ensure the affordability of insurance coverage such as limits on out-of-pocket costs;
- Access to specialists and the full range of therapies;
The debate over healthcare reform is taking center stage in our nation’s capitol and over the next several months, things will be moving at an accelerated pace as lawmakers attempt to restructure the healthcare system. NHF believes it’s important that the community remains informed as the debate progresses, so we’ve created this Web site to provide regular updates on various healthcare reform issues.