By Adam Alver, Policy Director
Following HFA’s Symposium, Word From Washington Returns
HFA is providing a spring update on the status of bleeding disorders programs under the federal government, including funding of the nation’s more than 140 Hemophilia Treatment Centers and the activities at the CDC’s Division of Blood Disorders and Public Health Genomics. We want to express our heartfelt gratitude for all the community members who attended our Symposium this year in New Orleans, and we hope to see those who could not attend at next year’s Symposium in Bellevue, Washington.
In case you missed it, you can view our last Word From Washington. Also, don’t forget to check out HFA’s new Advocacy Hub, our one-stop shop for advocacy efforts. There you can:
- Get the next Advocacy Network Quarterly Call dates on your calendar
- Find resources to engage with lawmakers, and
- Contact your members of Congress to Tell Them About the Real Cost of Healthcare Cuts, Request Restoration of the CDC’s Division of Blood Disorders, and Ask Them to Cosponsor the HELP Copays Act.
The Hemophilia Treatment Center Network
In 2025, the Department of Health and Human Services (HHS) under Secretary Kennedy proposed the reorganization of many of its divisions into the “Administration for a Healthy America”, or “AHA.” Under that reorganization, HHS did not specifically mention the funding of Hemophilia Treatment Centers (HTCs). Funding for the HTCs has, for many years, come from something called the Maternal and Child Health Bureau’s (MCHB) Services Block Grant, which provides money for “Special Projects of Regional and National Significance” (SPRANS). The HTCs are one of those “special projects” and have been mentioned in legislation by Congress for decades. While the government has continued to fund the HTCs in 2025 and 2026, HHS still has not specifically mentioned the HTC network as part of its new proposed structure.
Because of this, HFA is working with our other national partners including The National Bleeding Disorders Foundation, The Coalition for Hemophilia B, and The Hemophilia Alliance, to request continued funding for the HTC network in 2027.
In March, HFA joined NBDF for its annual Washington Days, where community members from around the country came to Washington, DC to advocate for HTC funding and the passage of the HELP Copays Act. We were pleased to attend the event and see so many familiar faces speaking up for the community’s needs and want to support advocates around the country tocontinue engaging with their lawmakers year-round to make their voices heard. The Bleeding Disorders Advocacy Network at HFA was also built to help turn advocacy into action by equipping our community members with the tools, support, and confidence to make an impact from anywhere.
The CDC’s Division of Blood Disorders and Public Health Genomics
As many in the community are aware, last year, HHS laid off nearly all the staff at the Division of Blood Disorders and Public Health Genomics (The Division). This April marked the one-year anniversary of the staff being placed on leave with no clear timeline for returning, meaning these programs they used to operate still do not work:
- Analyzing and uploading data collected from HTCs around the country to help inform patient care and treatment options,
- Testing services for inhibitors where an HTC or local lab might not have the right services available, and
- Testing patient samples and treatment products when complications or symptoms developed after the treatment was given.
These services are critical for our community to help ensure that patients receive world-class comprehensive care at the HTCs, and make sure that treatments are safe, which remains a continuing duty and responsibility of the government after the “Bad Blood” era. Even though these staff aren’t working and the services are inoperable, HHS has still requested funding for them.
In January, we mentioned that we are continuing to contact members of Congress to bring these staff back to work and make sure our community can access the information and services at the Division. We want to tell you now about some of the work we have done since January and the progress we’ve made, as well as how you, the community, have helped lift up this effort.
What’s HFA Doing About It?
Since March, HFA has contacted roughly 160 members of Congress to share the written testimony we submitted to the House Appropriations Committee about the importance of the Division of Blood Disorders, and to inform them about the Advisory Committee on Blood and Tissue Safety and Availability (ACBTSA) which was terminated last year.
HFA has asked congressional offices to reach out to CDC and HHS directly about our concerns for funded but not functioning programs that are a critical part of delivering lifesaving and cost-saving care to the bleeding disorders community. Several offices, including Republicans and Democrats, have helped us with this and we continue to keep these conversations going.
What’s The Community Doing About It?
The most important part of this effort has come from this amazing community of advocates. Alongside our efforts on the Policy and Advocacy Team in the last couple months, advocates have taken the following actions through the Bleeding Disorders Advocacy Network at HFA:
- Virtual and in-district meetings including with the offices of Senator Slotkin (MI), Senator Kaine (VA), Senator Murkowski (AK), Representative Self (TX), Representative Foster (IL), and Representative Schrier (WA)
- 575 emails sent to members of Congress
If you’ve set up and held a meeting with a Congressional office, made phone calls, or engaged outside email advocacy, please report your advocacy actions here so HFA staff can follow up on them.
Community Organizing Call Recap: We also held another community organizing call on April 8th, one year after staff were put on administrative leave, where we were joined by about 80 community members and national partners like NBDF, the American Thrombosis and Hemostasis Network (ATHN), and partners from the Sickle Cell patient community. HFA believes that if everyone impacted by the shuttered Division of Blood Disorders is working together to reinstate staff and services there, we are more likely to achieve our goal than working separately.
Some of the staff who were laid off from HHS last year have been brought back, like many staff at the National Institute for Occupational Safety and Health (NIOSH), who were reinstated after large amounts of advocacy and members of Congress addressing the importance of NIOSH with Secretary Kennedy. HFA believes that if we can grow our community voice and keep the drumbeat of advocacy sounding, we can also bring back the staff and services at the Division to make sure our community has what it needs to get world-class treatment and limit preventable complications.
If you haven’t already, we encourage you to contact your elected officials to ask for staff to be reinstated, and, if you’re comfortable with it, to ask them for a meeting about the issue. Whether you’ve never advocated before or are one of HFA’s Legislative Ambassadors, you can find the tools to make your advocacy successful on our Advocacy Hub under “Advocacy Resources” and “Policy Resources.”
We also encourage you to check out HFA’s Five Pillars of Public Policy to understand how we engage on policy issues, and to sign up for our Black Voices Initiative here.
Your Role in Our Continued Work
HFA needs your help to protect and support everyone in the bleeding disorders community right now. Here are three actions you can take today that will make an impact:
English 
Español de Puerto Rico