NHF Washington Days
Horizons in Hemophilia, March 2011
By Jeff Cornett, RN, MSN, Director of Training, Research, and Advocacy
Eleven people representing Georgia's bleeding disorder community traveled to Washington, DC. February 16-18 for the National Hemophilia Foundation's annual lobbying days. Justin, Mary Beth, Chip, Tammi, TJ, Les, and Najla joined Hemophilia of Georgia staffers Trish Dominic, Vic McCarty, Michelle Fitzwater, and Jeff Cornett to meet with our state's senators and representatives. Hundreds of people from bleeding disorder organizations across the country came to Washington to speak out in support of the Affordable Care Act (health care reform) and to defend funding for hemophilia treatment centers.
Since it was passed in March 2010, the Affordable Care Act has greatly benefitted the bleeding disorder community. It abolished lifetime caps on health insurance policies, allowed young people to remain on their parents' health insurance until age 26, set up high risk insurance pools that allow uninsured people with pre-existing conditions like hemophilia to purchase health insurance, and stopped insurance companies from cancelling someone's insurance when they get sick. Starting in January 2014, people with bleeding disorders will be able to purchase health insurance at affordable prices on the individual market. This will allow them to be self-employed or open their own businesses. The bleeding disorder community stressed to members of Congress how important these reforms are and our opposition to any efforts to repeal them.
The Republican leadership in the House of Representatives is proposing cutting funds to the agencies that support the Hemophilia Treatment Centers (HTCs). HTCs get money from the Maternal and Child Health Bureau (MCHB) and the Centers for Disease Control & Prevention (CDC). The funding for HTCs is small and has not increased in more than ten years. More than 75% of the bleeding disorder community receives care from HTCs.
The Maternal and Child Health Bureau (MCHB) funding of $4.9 million allows HTCs to provide critical services that are not covered by insurance, such as case management and social work. MCHB recognizes the cost-effective disease management provided by the HTCs and their role as "medical homes" for individuals with bleeding disorders, from childhood through end of life. The CDC-Division of Blood Disorders provides about $7 million in funding to HTCs for research and blood safety surveillance. CDC programs have prevented complications from hemophilia and have led to the development of strategies that have helped diagnose women with bleeding disorders. Reductions in funding for the hemophilia programs at MCHB and CDC would likely result in staffing cuts at HTCs and would jeopardize quality of care for people with bleeding disorders. Washington Day participants asked Congress to oppose cuts to MCHB and the CDC in 2011 and asked that funding be maintained in 2012.
The Georgia participants felt that they were an effective voice for our state's bleeding disorder community. Justin felt the opportunity to meet with members of Congress and their staff was beneficial. He said, "As we sit at home and watch TV on issues that will soon affect our community, I think that we don't have a voice or my issue does not matter. As you meet with members and staff they do care and understand." TJ recognized "the importance in telling the Congressmen or their aides about real life experiences, from real life people. Our stories do plant a seed in their mind."