In April 2026, Hemophilia Federation of America submitted written testimony to the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies. As HFA pursues continued support of world-class care for patients and ensuring the nation’s duty and responsibility to product safety, the testimony is one of many ways HFA plans to address a clear pathway to care.
Read the full testimony letter here or below.
Written Testimony Submitted for the Record to the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies – FY 2027
Hearing Date: April 16, 2026
Department of Health and Human Services
Submitted by Adam Alver, Policy Director, Hemophilia Federation of America
Chair Aderholt, Ranking Member DeLauro, and Members of the Subcommittee, the Hemophilia Federation of America (HFA) thanks you for the opportunity to submit testimony for the record and asks for your continued support of Americans with bleeding disorders in Fiscal Year 2027 (FY27). For 50 years, the Subcommittee on Labor, Health and Human Services, Education, and Related Agencies has supported federal programs that have ensured Americans with bleeding disorders can live long and healthy lives, and we applaud your leadership. As the Subcommittee begins deliberations on appropriations for FY27, HFA urges that continued funding be provided for the following proven programs in the Department of Health and Human Services (HHS):
Maternal and Child Health Bureau (MCHB) Services Block Grant – Special Projects of Regional and National Significance (SPRANS), $215.1 million, including:
• Hemophilia Treatment Centers (HTC), $4.9 million
National Center on Birth Defects and Disabilities (NCBDDD), $205 million, including:
• Hemophilia Activities, $3.5 million
• Hemophilia Treatment Centers, $5.1 million
HFA is a national nonprofit patient advocacy organization for people living with bleeding disorders. HFA was founded in 1994 following the HIV Crisis that resulted in the death of 5,000-10,000 Americans with bleeding disorders through transfusion of contaminated blood products, and since then, has worked as a voice for transparency, safety, access and affordability in hemophilia and bleeding disorders diagnosis and care. We advocate for safe and effective therapies, and quality, affordable health coverage, ultimately seeking a long and healthy life for all Americans with bleeding disorders. HFA represents more than 30,000 patients with hemophilia, more than 80,000 patients with Von Willebrand Disease (VWD), and more than 20,000 patients with other rare bleeding disorders.
Inherited bleeding disorders present complex, lifelong challenges for affected individuals and their families. Affecting an estimated 3.5 million Americans, these disorders pose risks of serious internal bleeding, excessive bleeding following surgery, prolonged hemorrhage during menstruation or following childbirth, or, in the most severe cases, permanent disability and even death. Depending on their disorder, affected people typically require treatment with infused or injected therapies to prevent bleeding. They also run the risk of complications and comorbidities, ranging from lifelong, irreversible joint damage and inhibitors (a devastating immune response to infused clotting factor affecting up to 20% of individuals with hemophilia that renders standard treatment ineffective), to HIV and Hepatitis C for surviving patients who were exposed to contaminated blood products in the 1980 and 90s.
MCHB Services Block Grant – SPRANS – Hemophilia Treatment Centers, $4.9 million
The Hemophilia Act of 1973, authorized by Congress in 1974 and funded at $3 million in 1975, established the first federally funded comprehensive, multidisciplinary treatment centers for hemophilia patients in the United States. Through the present network of more than 140 HTCs, HRSA’s MCHB has helped to provide services not typically reimbursed by insurance, such as physical therapy assessments, social work and case management services. More recently, these funds have also supported a coordinating center that disseminates best practices and supports all HTCs in providing high-quality care to people with bleeding disorders.
HHS’ most recent FY27 Justification of Estimates for Appropriations Committee, while incorporating some MCHB programs into the proposed new Administration for a Healthy America (AHA), does not provide details on the future of the MCHB Hemophilia Program and its activities. We respectfully request that robust funding continue to be provided for this life-changing network of world-class comprehensive care to ensure Americans with bleeding disorders have access to specialists practiced in bleeding disorders treatment and multidisciplinary support.
NCBDDD Hemophilia Activities and Hemophilia Treatment Centers, $3.5 and $5.1 million
With the passage of the Hemophilia Act of 1973 and subsequent funding in 1975, the creation of the HTC network became the precursor to the Centers for Disease Control and Prevention’s (CDC) current hemophilia and bleeding disorders-related activities under the NCBDDD’s Division of Blood Disorders and Public Health Genomics (DBDPHG). During the advent of the HIV Crisis in the United States, the CDC became the first entity to detect and accurately diagnose the presence of HIV in bleeding disorder patients, which had been transmitted to them through the administration of blood and blood-based products derived from infected donors. Through these efforts, the DBDPHG was also the first US-based entity to show that heat treatment of blood products killed HIV which could prevent further viral transmission through blood-based treatment products.
Beginning in 1983, Congress appropriated funding for CDC to provide AIDS risk reduction services for individuals with hemophilia and for others who used blood-based treatment products. In subsequent years, additional federal funding provided the means to expand their activities to track HIV risk reduction services at HTCs, and create the Hemophilia Surveillance System, which was used to conduct active, population-based data collection to understand the prevalence of hemophilia, its associated illnesses, complications, and deaths. This data indicated that approximately two-thirds of patients were receiving care at an HTC and that HTC care was associated with increased survival, and later studies indicated that approximately 82% of Americans with hemophilia were receiving care at federally funded HTCs.
In 1998, the Hemophilia Surveillance System transitioned into the Universal Data Collection (UDC) surveillance system, which monitored HIV and bloodborne viral hepatitis in persons with hemophilia, thereby tracking blood safety, and which tracked the prevalence of and trends in complications associated with hemophilia. This coincided with the passage of the Ricky Ray Hemophilia Relief Fund Act of 1998, created to compensate the families of thousands of Americans with bleeding disorders who lost their lives due to contaminated blood products, and which HFA notes was cosponsored by members of the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies, including present Chair Aderholt, and Ranking Member DeLauro.
In 2010, the UDC became the Community Counts Public Health Surveillance of Bleeding Disorders Project (Community Counts), following CDC-coordinated meetings between key stakeholders in the bleeding disorders community. Since then, Community Counts has included inhibitor tracking, additional health indices like cancer and cardiovascular disease, and other additional data with special consideration of health conditions to inform, improve, and guide physicians’ treatment of Americans with bleeding disorders. This ongoing activity helped accomplish a landmark development in human and bleeding disorders history – the first bleeding disorder population to reach old age – a feat which would not have been possible without the Subcommittee’s continued support.
The DBDPHG, in collaboration with other national entities, provides the following services to Americans with bleeding disorders, other blood disorders notwithstanding:
• Laboratory Testing: The DBDPHG’s hemostasis laboratory branch assists HTCs with advanced laboratory testing for inhibitors, particularly those located in rural areas without access to testing facilities. This testing has also provided longitudinal tracking capabilities to identify emerging trends on a national scale. Additionally, such testing has led to the creation of a DNA mutation database to help inform both diagnosis and treatment.
• Adverse Event Testing, Blood Safety, and Biological Specimen Repository: The DBDPHG, in continuing its original activities tracking HIV/AIDS prevalence within the bleeding disorders population during the 1980s and 90s, provides post-administration adverse event testing of blood samples. Notably, the DBDPHG was recently able to detect parvovirus in purified treatment products and advised on product manufacturing safety revisions, and its staff have supported CDC investigations into West Nile, Zika, and other viral transmission risks in blood products as subject matter experts. The DBDPHG maintains a repository of blood samples from HTC patients dating back to 1996 – an invaluable resource for “look back” investigations into new and emerging blood borne diseases.
• National Information Coordination: Through its activities and the Community Counts Program, the DBDPHG provides national-level information sharing to national entities like the HTC network related to emerging threats or complications which may be present in distant and non-communicating regions.
Beyond Americans with bleeding disorders, the DBDPHG also addresses the needs of 1 in 76 Americans affected by a blood disorder, including Sickle Cell Disease, Venous Thromboembolism, Thalassemia, and more. Its staff have spent more than 30 years working within these communities as scientific experts and collaborators to ensure the agency’s work meets the needs of all Americans with blood disorders, which has received longstanding bipartisan support. The DBDPHG staff are the only national-level public health resource for these communities, widely respected as highly specialized epidemiologists and subject matter experts by local, state, and federal health agencies, and are trusted members of the blood disorder communities through partnership development, and support of families, caregivers, healthcare providers, and community-based organizations.
Due to the April 1, 2025, reductions in force within the CDC, all but two leadership staff in the DBDPHG were placed on administrative leave. While the most recent Justification of Estimates for Appropriations Committees by HHS has indicated that the aforementioned bleeding disorders programs would move to and be consolidated within AHA, and that grant funded projects have been maintained by temporary administrators assigned to the DBDPHG, the present status of internal activities remains uncertain. HFA notes that as of the submission of this written testimony, the DBDPHG semi-annual Hemophilia Treatment Center Population Profile Report is unavailable for 2025 and 2026, the publicly accessible Community Counts Visualization Tool is inoperative, and the status of laboratory activities and maintenance of the biological specimen repository is unknown. HFA respectfully asks that alongside continued funding, the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies will direct CDC to submit a report no later than 90 days after enactment of the FY27 Appropriations Act describing the status of activities conducted through the DBDPHG.
HFA deeply appreciates the long-standing support of the Subcommittee for Americans with bleeding disorders and looks forward to working with Congress during the FY27 appropriations process.
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