With the federal deficit now in the trillions, one of the government’s top priorities is to slash spending. That means that funding for the national network of hemophilia treatment centers (HTCs) could be on the chopping block.
The HTC network currently receives about $12 million in federal funding. The Centers for Disease Control and Prevention (CDC) provides about $7 million for research, education and blood safety surveillance. The Maternal and Child Health Bureau provides the other $4.9 million to support clinical services that insurance typically doesn’t cover, such as case management and social work.
However, funding has remained level for years even as the number of HTC patients has soared, says Ellen Riker, the National Hemophilia Foundation’s (NHF’s) Washington senior policy adviser. Growing numbers of women with bleeding disorders and patients with von Willebrand disease account for some of the spike in patient numbers, she says.
That steady funding is now under threat. “Many new members of Congress were elected based on their interest in reducing the size of the government, and this is a government program,” says Riker. “There’s such a drive to reduce the deficit that public health programs for the first time could be in real jeopardy.”
CDC’s overall funding for HTCs may also be reduced due to additional priorities in the Division of Blood Disorders, such as funding for sickle cell disease and pulmonary embolism/deep vein thrombosis, Riker says.
The Power of Advocacy
The bleeding disorders community is fighting to maintain funding levels. The comprehensive care model embodied by HTCs saves money in the long run, says Michelle Rice, NHF regional director of chapter services. “A 2000 study conducted by the CDC cites a 40% decrease in morbidity and mortality for people who received their care through an HTC,” Rice says. “Having access to quality, comprehensive care provided by an HTC helps improve overall quality of life, allowing those affected to lead active, productive lives.” Building relationships with policymakers and educating them about such facts is key to ensuring everyone gets the care they need, says Rice. “Legislators are actually more accessible than people think.”
To expand your advocacy efforts, Rice suggests signing up for NHF’s eNotes to receive e-mail alerts when there’s an immediate need to contact your legislators. You can use NHF’s talking points when you contact your elected officials via e-mail, letter or phone. Better yet, head to Capitol Hill during NHF’s annual Washington Days event in February, when the bleeding disorders community meets with congressional representatives and staff.
Advocacy is simply sharing your story. “I use my boys as examples,” says Rice of her sons, Lance, 21, and Lucas, 15, who have severe hemophilia A. “Tell them how your HTC has made a difference in your care and your life.”
Don’t underestimate the impact your efforts can have. “A lot of major successes in advocacy are because of individuals willing to tell their story,” says Riker. When your story resonates with members of Congress, they will want to know how they can help you, she says.