FED UP with Bleeding Disorders Act

Summary#

This bill directs the Secretary of Health and Human Services (HHS) to review and, as needed, update federal programs, activities, and strategic plans about bleeding disorders in women and girls. The review must cover: the state of the science; training and education for providers; access to treatment and services (including care at hemophilia treatment centers, other clinical settings, and barriers in rural and underserved areas); and inclusion of women and girls in clinical research. HHS must provide a public comment period during the review and prepare a comprehensive report within two years for specific congressional committees and post it publicly. The report must summarize findings, give recommendations to improve the listed areas, and recommend ways to improve coordination among federal agencies (including CMS, HRSA, CDC, NIH, VA, Defense Health Agency, and FDA).

The bill defines "bleeding disorder" as an inheritable condition that impairs clotting, such as hemophilia, von Willebrand disease, and rare factor deficiencies, and that can cause extended bleeding.

Not later than one year after the HHS report is published, HHS must award competitive grants or contracts to public or private entities to run a national, evidence-based education and awareness campaign aimed at improving awareness of, and diagnosis and treatment for, women and girls with bleeding disorders. The campaign must target both the public (women and girls) and providers (including school nurses, pediatricians, primary care, family medicine, obstetricians and gynecologists, and hematologists). The campaign must include strategies to reach rural and underserved areas, culturally and linguistically appropriate resources, dissemination to public health departments, schools, medical schools, and health care facilities, and benchmarks and qualitative assessments. HHS must submit an evaluation of the campaign to Congress before the end of the last fiscal year for which funding is available. The bill authorizes $10,000,000 for each fiscal year 2027 through 2031 to carry out the campaign.

The bill also includes findings that cite estimates and concerns about prevalence, diagnostic delays, risks in pregnancy, carrier factor levels, economic costs of heavy menstrual bleeding, and benefits of bleeding-disorder research to military and trauma care.

What it means for you#

  • Women and girls: The bill directs federal action aimed at increasing awareness, diagnosis, and treatment of bleeding disorders in women and girls. It identifies outreach and education as priorities.
  • Health care providers: The bill calls for improved training and education for many types of providers, and it targets providers as a key audience for the awareness campaign.
  • Community organizations and health departments: These organizations may receive materials and information and could be partners in outreach.
  • Research and grant applicants: HHS will award competitive grants or contracts for a national awareness campaign; eligible public or private entities may apply.
  • Rural and underserved populations: The bill requires strategies to reach people living in rural and underserved areas.

Expenses#

  • The bill authorizes $10,000,000 for each of fiscal years 2027 through 2031 to carry out the national awareness campaign.
  • No publicly available information on total cost estimates for the HHS review, report, or other activities beyond the campaign authorization.

Proponents' View#

Proponents point to findings in the bill that state:

  • As many as 1 percent of women in the United States may have a bleeding disorder and many are unaware of it.
  • Women have reported delays in diagnosis of 16 years or more.
  • Increasing timely diagnosis aligns with Healthy People 2030 goals.
  • Care at hemophilia treatment centers is associated with 40 percent lower mortality and hospitalization for bleeding complications compared with not receiving that care (as stated in the bill findings).
  • Women with bleeding disorders face higher risk of adverse pregnancy outcomes.
  • Up to 50 percent of girls and women who are carriers for hemophilia A or B may have factor VIII or IX levels below 50 percent and be at risk of bleeding symptoms; better research could help avoid unnecessary hysterectomies and preserve fertility (as noted in the bill findings).
  • The bill lists estimated annual direct and indirect economic costs of heavy menstrual bleeding.
  • Research into bleeding disorders is beneficial to military blood research and trauma bleeding prevention and treatment.

Opponents' View#

No publicly available information.