FED UP Act aims for better care for women, girls with bleeding disorders
US legislation would reduce barriers to care for hemophilia gene carriers
Written by |
- The FED UP Act is aiming to improve care for women and girls with bleeding disorders, including hemophilia gene carriers.
- Many female patients are underdiagnosed, yet experience symptoms such as heavy menstrual bleeding and childbirth complications.
- The proposed legislation promotes better access to care, research inclusion, and education for healthcare providers and the public.
A proposed bill in the U.S. House of Representatives — one dubbed the FED UP Act for short — is aiming to reduce barriers to care for women and girls with bleeding disorders, including those who carry hemophilia-related genes.
The legislation, fully, the Fostering Effective Diagnosis and Treatment for Underserved Populations with Bleeding Disorders Act, would improve healthcare for, among others, female patients with these conditions whose symptoms — such as heavy menstrual bleeding — are often overlooked, according to a press release from the National Bleeding Disorders Foundation (NBDF).
“This legislation represents meaningful progress toward breaking down barriers and ensuring future generations receive the care and recognition they deserve,” said Dawn Rotellini, the NBDF’s chief operating officer.
Three U.S. representatives — Julie Johnson of Texas, Joe Wilson of South Carolina, and Sarah McBride of Delaware — sponsored House Resolution 8794, known as the FED UP with Bleeding Disorders Act. Advocacy from NBDF helped develop the bill, according to the nonprofit.
In hemophilia, genetic mutations cause problems with clotting factors, proteins that help the blood form clots. As a result, people with the condition can bleed easily and excessively.
The gene mutations that cause the most common types of hemophilia occur on the X chromosome. Because males typically have only one X chromosome, they are more likely to develop the disease. Females generally have two X chromosomes, and if just one contains a mutation, the other can sometimes compensate.
As such, girls and women are classified as hemophilia carriers rather than people with hemophilia if they have at least one functional copy of the gene.
Unique challenges for women, girls with bleeding disorders
For much of history, the medical community assumed that hemophilia carriers didn’t have symptoms of hemophilia. However, about one-third of carriers have low enough levels of clotting factors that may lead to symptoms.
Women with bleeding disorder symptoms may face unique challenges, like heavy menstrual bleeding and complications during childbirth.
Lack of recognition of these symptoms may make it more difficult to receive a bleeding disorder diagnosis. A recent study showed that fewer women and girls were registered as hemophilia carriers than would be expected, suggesting underdiagnosis.
For far too long, women and girls [with bleeding disorders] have been blocked from timely diagnosis, comprehensive care, and inclusion in clinical research.
Without a diagnosis, it is difficult for girls and women to receive proper care and monitoring for potential complications. The lack of a diagnosis may also limit their access to genetic counseling services, which can help hemophilia carriers make decisions about family planning.
“NBDF and the bleeding disorders community have worked tirelessly to bring visibility to the unique challenges faced by women and girls,” Rotellini said in another NBDF press release. “For far too long, women and girls have been blocked from timely diagnosis, comprehensive care, and inclusion in clinical research.”
The FED UP Act aims to reduce each of these barriers. It calls for improved access to care, involving women and girls in research on bleeding disorders and clinical trials of investigational therapies. It also proposes campaigns to educate healthcare providers and the general public about these issues.
Lobbying from the NBDF and other organizations helped support the development of the FED UP Act, according to advocates.
“This legislation is the result of years of advocacy from a community that has too often been overlooked,” said Julie Fredericksen Jones, executive director of Texas Central Bleeding Disorders.
Among other efforts, in 2025 the NBDF organized a dedicated Capitol Hill Day to educate legislators about challenges for girls and women with bleeding disorders.
Leave a comment
Fill in the required fields to post. Your email address will not be published.