#United States #Washington D.C. #Women Health #Bleeding Disorders #NBDF

The FED UP Act: A Step Forward in Women's Health

Last week, a significant legislative proposal was introduced by Representatives Julie Johnson (D-TX-32), Joe Wilson (R-SC-02), and Sarah McBride (D-DE-At Large). This bill, known as the Fostering Effective Diagnosis and Treatment for Underserved Populations with Bleeding Disorders Act, intends to tackle the healthcare challenges faced by women and girls suffering from bleeding disorders. This initiative stands as a crucial advocacy effort championed by the National Bleeding Disorders Foundation (NBDF).

Understanding the Issue

Historically, bleeding disorders have often been mischaracterized as conditions primarily affecting males. This perspective contributed to a troubling trend where women and girls with such conditions, including von Willebrand disease and hemophilia, experience delays in diagnosis and inadequate healthcare. Common symptoms such as heavy menstrual bleeding are frequently dismissed, leaving many without the necessary medical evaluations for their conditions.

Advocates and the NBDF have relentlessly worked to dispel these myths and elevate awareness around bleeding disorders among females. The FED UP Act specifically addresses these issues by calling for a comprehensive federal review encompassing all current programs related to women's bleeding disorders.

Core Objectives of the FED UP Act

The primary aims of the FED UP Act are multifaceted:
1. Enhance Research: It seeks to increase research funding dedicated to understanding how these disorders uniquely affect women and girls.
2. Provider Education: The act emphasizes the need for better training and education among healthcare providers to recognize and properly respond to symptoms indicating potential bleeding disorders in females.
3. Access to Care: Improving access to treatment and healthcare facilities is a key focus, ensuring that affected individuals receive timely and adequate care.
4. Clinical Trials Inclusion: There is a strong push for the inclusion of women and girls in clinical trials, which would foster a better understanding of these disorders and lead to more effective treatments.
5. Public Awareness Campaign: The bill mandates the establishment of a nationwide public awareness initiative aimed at educating the general populace about bleeding disorders affecting women and girls.

Legislative Momentum

The introduction of the FED UP Act comes after considerable engagement between advocacy groups and lawmakers in Congress. Earlier in 2025, the NBDF held a Capitol Hill Day dedicated to elevating the voices of women and girls facing these challenges. This event was pivotal in garnering support and awareness among key policymakers and the broader public during Washington Days in 2026.

Dawn Rotellini, COO of the NBDF, highlighted the importance of this legislation, stating, “This legislation represents meaningful progress toward breaking down barriers and ensuring future generations receive the care and recognition they deserve.” This underscores the act's potential as a catalyst for significant change within the healthcare system.

About the National Bleeding Disorders Foundation (NBDF)

The NBDF is committed to finding effective treatments and cures for inherited bleeding disorders while also focusing on preventing complications associated with these conditions. They advocate for patients nationwide, providing essential education and resources.. Formerly known as the National Hemophilia Foundation, the organization has evolved to encompass a broader range of bleeding disorders, providing a comprehensive support system for affected individuals and families.

In conclusion, the FED UP Act is not just legislation; it represents a hopeful step toward achieving equity in diagnosis and treatment for women and girls who have historically been overlooked in the context of bleeding disorders. Through this act, the NBDF and its advocates aim to ensure that future generations access the care they need and deserve.