At the end of February, to kick off March as Bleeding Disorders Awareness Month, GLHF joined more than 400 members of the bleeding disorders community in Washington, D.C. We met with members of Congress who shape national healthcare policy to share how federal legislation and funding affects people with bleeding disorders.
“This opportunity to meet with lawmakers and share stories and personal experiences about key issues affecting our community is crucial,” said Danielle Leitner Baxter, GLHF’s Executive Director. “We’ve seen that we can make a big impact when we present a clear, consistent message. Because GLHF attends every year, we have established productive relationships with lawmakers and their staff.”
The focus of this year’s event was the Hemophilia Skilled Nursing Facilities Access Act, legislation that was introduced in the Senate by Senators Bob Menendez (D-NJ), Mike Enzi (R-WY) Sheldon Whitehouse (D-RI), and in the House by Representatives Debbie Dingell (D-MI-12), Darin LaHood (R-IL-18), Brian Higgins (D-NY-26) and Gus Bilirakis (R-FL-12). The legislation would allow skilled nursing facilities (SNFs) to bill Medicare for clotting factor separate from their established daily rate. Currently, SNF’s cannot do this, which results in bleeding disorders patients on Medicare being denied access to these facilities after surgery or a serious bleeding episode. Attendees asked legislators to co-sponsor the bipartisan bills.
The second request was to maintain funding for hemophilia programs at federally funded Hemophilia Treatment Centers and research that pertains to bleeding disorders.
Now, more than ever, with the impact of COVID-19, access to health care and funding for HTC’s and bleeding disorders research, are critical. We need to continue to strengthen our advocacy efforts. “Hemophilia is rare so most of our legislators don’t realize the care and costs associated with staying healthy,” said Danielle. “The people I meet are usually shocked at the high cost of factor and unaware of the specialized treatments.”
If you want to get involved, share your story, and speak up for our community, please email firstname.lastname@example.org.