Exciting legislative news to share straight from Washington, D.C., that hits very close to home. Federal legislation has been introduced in the United States Congress to address long-standing gaps in research, diagnosis, and treatment for women and girls living with bleeding disorders. The bill, officially titled the Fostering Effective Diagnosis and Treatment for Underserved Populations with Bleeding Disorders Act of 2026, or simply the “FED UP with Bleeding Disorders Act of 2026,” was introduced by Representative Julie Johnson (D-TX-32).What makes this a monumental moment for our local community is its powerful bipartisan support, including lead co-sponsorship from South Carolina’s very own Representative Joe Wilson (R-SC-02), alongside Representative Sarah McBride (D-DE-At Large).
A Proud Moment for South Carolina Advocacy
This historic step forward is the direct result of tireless grassroots advocacy from across the bleeding disorders community. In fact, our very own Bleeding Disorders Association of South Carolina (BDA-SC) Vice President, Candi Mitchum—who is a constituent of Representative Wilson—personally traveled to Washington Days to share her story and educate Congressional offices.
Reflecting on her own journey, Candi shared a powerful sentiment that has now been featured in national coverage: “I was 27 years old when I was diagnosed with von Willebrand disease, after years of symptoms and inadequate care. No one should have to wait that long for answers.”
Thanks to the dedication of local advocates like Candi, our representatives are listening and taking action.
Why the FED UP Act is Desperately Needed
For decades, bleeding disorders have been commonly mis-associated primarily with men, leaving women and girls to face significant barriers to care. The legislative findings outlined in the FED UP Act illustrate the stark realities that this bill aims to correct:
- Widespread Impact: Current data estimates that up to 1 percent of women in the United States may have a bleeding disorder, though many remain entirely unaware of their condition. Severe
- Diagnostic Delays: Women frequently face unacceptably long delays in receiving an accurate diagnosis, with timelines often stretching 16 years or more. Timely diagnosis—particularly for conditions like von Willebrand disease—is critical to aligning with public health goals such as Healthy People 2030.
- The Danger of Missing Specialized Care: Without a proper diagnosis, women cannot access specialized care from providers with requisite expertise, such as Hemophilia Treatment Centers (HTCs). This specialized access is vital, as mortality and hospitalization rates for bleeding complications from hemophilia are 40 percent lower among individuals who receive care at HTCs than those who do not.
- Risks to Pregnancy and Health: Women with bleeding disorders face significantly higher risks of adverse pregnancy outcomes.
- Hemophilia Carriers at Risk: As many as 50 percent of girls and women who are carriers for hemophilia A or B have clotting factor VIII or IX levels below 50 percent, placing them at heightened risk for bleeding symptoms or heavy bleeding related to menstruation or pregnancy.
- Unnecessary Hysterectomies: In severe cases, a hysterectomy is a commonly recommended treatment option for heavy menstrual bleeding; however, expanded research could help avoid these unnecessary surgeries and preserve fertility.
- Staggering Economic Toll: Heavy menstrual bleeding carries an enormous economic burden, costing an estimated $1,000,000,000 annually in direct costs and $12,000,000,000 in indirect costs.
What the Bill Proposes
To dismantle these systemic barriers, the FED UP Act outlines a comprehensive federal strategy focused on education, equity, and research:
- Federal Strategy Update: The Secretary of Health and Human Services (HHS) will serve as the lead agency head to review and update federal programs, activities, and strategic plans regarding the state of science for bleeding disorders in women and girls.
- Targeted Focus Areas: The review will evaluate provider training, clinical care delivery across multiple settings, and specific access barriers faced by women living in rural or underserved areas, while also ensuring the inclusion of women and girls in clinical trials.
- Accountability and Reporting: Within two years of enactment, the Secretary must submit a comprehensive report detailing recommendations and assessments to Congressional committees and publish it on the public HHS website.
- National Awareness Campaign: Within one year of the report’s publication, HHS will award competitive grants or contracts to launch a nationwide, evidence-based public education and awareness campaign. This campaign will distribute critical resources to health departments, medical schools, and clinics, specifically targeting school nurses, pediatricians, primary care doctors, OB/GYNs, and hematologists.
- Dedicated Funding: To ensure the campaign’s success and reach into underserved areas, the bill authorizes an annual appropriation of $10,000,000 for each of the fiscal years 2027 through 2031.
National Momentum is Building
The entire bleeding disorders community is closely watching this historic moment unfold. The National Bleeding Disorders Foundation (NBDF) has championed the bill as a key federal priority. As Dawn Rotellini, Chief Operating Officer of NBDF, noted:
“NBDF and the bleeding disorders community have worked tirelessly to bring visibility to the unique challenges faced by women and girls. For far too long, women and girls have been blocked from timely diagnosis, comprehensive care, and inclusion in clinical research.”
You can read more about how member organizations and national leaders are rallying behind this legislation by viewing the full community coverage on the National Bleeding Disorders Foundation News Section.
Stay Tuned and Get Involved!
This legislation represents a critical leap toward ensuring future generations of women and girls receive the care, early diagnosis, and respect they deserve. We want to extend a massive thank you to Rep. Julie Johnson, South Carolina’s own Rep. Joe Wilson, and all the advocates—especially our own Candi Mitchum—who made this moment possible.
We encourage everyone in our South Carolina community to read the legislation first-hand. You can access and read the official document text directly via Representative Julie Johnson’s Legislative Portal.