For the past three years, patients and their families at the National Hemophilia Foundation’s (NHF) Washington Days advocacy event have hammered home a strong message to Congress: Maintain funding for a successful federally supported program—the US network of hemophilia treatment centers (HTCs). This year that message was not only heard, but received and acted on. On Thursday, June 14th, the Senate Appropriations Committee passed its FY 2013 Labor, Health and Human Services, Education, and Related Agencies Appropriations Bill, allocating $6 million in funding for surveillance and activities at HTCs.
This “win” is significant because President Obama’s budget proposal reduced funding to support only 50 HTCs, rather than the full network of approximately 140. This downsizing would have seriously affected the quality of surveillance data collected by the HTCs and significantly reduced much-needed support for the centers.
HTCs, established in 1974, provide the model of comprehensive care for other patient health organizations. Data from the Centers for Disease Control and Prevention (CDC) show that the benefits of HTCs are plentiful, including decreasing morbidity and mortality by 40%.
Taking the lead in this effort was Senator Jack Reed (D-RI), a member of the Senate Committee on Appropriations and Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. He worked closely with the chairman of the subcommittee, Tom Harkin (D-IA), to ensure that specific language was included in the funding bill for 2013, stipulating that the $6 million should be used for surveillance and research at an “expanded number of centers.” This language is key to preventing CDC from reducing the number of HTCs it supports.
NHF Board member Barbara J. Gordon, LCSW, has participated in NHF’s Washington Days for a decade, often with her twin sons Sam, who has hemophilia, and Max, who does not. They have been fortunate to meet with Sen. Reed almost annually in his DC office. Sen. Reed has listened to the concerns raised and, over the years, has increasingly tried to help the bleeding disorders community and her sons’ HTC at Hasbro Children’s Hospital in Providence, Rhode Island, says Gordon.
“But this year we had a much bigger challenge with the Obama budget proposal to cut funding for the HTCs,” Gordon says. “Thankfully, Sen. Reed came through for us in a big way this time.”
NHF has recognized Sen. Reed at Washington Days by presenting him with the L. Michael Kuhn Award for outstanding leadership and advocacy on behalf of the bleeding disorders community. “Sen. Reed has been a true champion of our community,” says Val D. Bias, NHF CEO. “With his seat on the Appropriations Committee, he has been able to reverse the funding situation for HTCs. For that we are grateful.”
To support Sen. Reed’s efforts on the Appropriations Committee, NHF worked with Sen. Whitehouse (D-RI) on a “Dear Colleague” letter, seeking other senators’ support for restoring funds to the HTCs. Individuals and families participating in NHF’s Washington Days in March 2012 can take credit for the eight senators who co-signed the letter to the Appropriations Committee: Senators Coons (DE), Gillibrand (NY), Merkley (OR), Reed (RI), Shaheen (NH), Stabenow (MI), Whitehouse (RI) and Wyden (OR).
The House of Representatives still needs to pass its FY 2013 appropriations bill. The House and Senate will then need to craft and pass a final bill. Final votes on the bill are not expected until after the presidential election in November.
“While our work is not over, we need to celebrate this success,” says Michelle Rice, NHF’s director of public policy. “The actions of the Senate Appropriations Committee are a testimony to the power of grassroots advocacy and the impact of personal stories.”