Dear Bleeding Disorder Community Members and Stakeholders,
As you may have heard in recent news, this week the White House issued a funding freeze on all federal grant and loan programs. This letter is intended to provide our community with factual information and a way to take action. Upon review of the White House’s directives, HFA has identified several federal grant and loan programs they list that benefit our community and which may be at risk, including but not limited to:
- Ending the HIV Epidemic for America – Ryan White HIV/AIDS Program,
- Ryan White HIV/AIDS Dental Reimbursement Program,
- Blood Disease Resources Research, and
- Blood Disorder Program Prevention, Surveillance, and Research.
Since the 1960s and beyond, patients with Hemophilia and other bleeding disorders have unwaveringly fought for access to treatment, care, and new medical treatments. While efforts were made to support bleeding disorders by the federal government in the 1970s, lest we forget, in the 1980s, the HIV/AIDS crisis struck our patients and family members. Due to institutional and systemic bad acting, and slow recognition exacerbated by public opinion that linked the HIV/AIDS crisis to immorality, more than 4,000 of our sons, brothers, husbands, fathers, and family members perished during the epidemic.
The laws and programs that followed, like the Ryan White HIV/AIDS Program and CDC blood supply monitoring, exist because of the literal blood and tears that have been shed by generations of families living with bleeding disorders who also suffered through the HIV/AIDS epidemic. Thousands of people who share the burden of living with a chronic rare disease like hemophilia are helped by these programs, and through their history, they are a testament to the fact that what affects one population affects another, even if a direct connection may not easily be seen.
Since 1994, HFA has continued to be a voice of advocacy and strength for the bleeding disorders community, working to ensure that the failures of the past do not once again become the realities of the future. Please consider clicking here to send a message to your members of Congress today.
We urge you to take this opportunity to share your personal reason why continued investment in research, treatment and care for people living with HIV/AIDS and/or bleeding disorders shouldn’t be shut down.
HFA will continue to provide updates on this situation as it develops, and we encourage you to reach out with any questions, comments, or concerns you may have regarding this directive and affected programs.
Sincerely,
Dan Kelsey, President and CEO HFA
Luke Runion, HFA Board Chair of Directors
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