This past March, advocates from across the country joined the National Hemophilia Foundation for its annual Washington Days. While there, we urged lawmakers to:
- Maintain CDC (Center for Disease Control) funding for data collection at all 135 Hemophilia Treatment Centers
Without this funding, the amount of data collected will be dramatically reduced. This will compromise the program's effectiveness in monitoring the safety of the blood supply, improving treatment and prevention strategies, and ensuring access to specialized care.
- Support HR1919, the Bleeding Disorders Screening, Awareness and Further Education (SAFE) Act
This bill would increase the screening and diagnosis of bleeding disorders in adolescents. By ensuring early identification of this condition, people can start effective treatment sooner.
- Fully implement the Affordable Care Act
We have already seen the benefits of this Act in dependent care coverage until age 26, the elimination of lifetime caps, and no denial of coverage due to pre-existing conditions. For more information on the implementation of the Affordable Care Act, go to the "Healthcare Reform" section on our Advocacy pages.