More than 300 members of the bleeding disorders community gathered in Washington, DC, on March 8 for NHF’s annual advocacy event, Washington Days. They met with members of Congress and legislative aides, told their stories and advocated for issues important to them this year.
Delegates focused on continued funding for the network of hemophilia treatment centers (HTCs) and support of the Affordable Care Act (ACA). The Centers for Disease Control and Prevention has proposed reducing the number of HTCs conducting surveillance from 135 to 50 in fiscal year 2013. Data collected at HTCs are used to inform treatment decisions, perform research studies, and provide information about HIV and hepatitis transmission. The information also helps monitor blood product safety. Reducing the number of HTCs conducting surveillance would limit the amount of data HTCs collect, decreasing the quality of research.
Delegates also asked their representatives in Congress to support the ACA. Several ACA reforms have improved the lives of people with bleeding disorders by eliminating lifetime caps and requiring health insurance coverage for children with pre-existing conditions.