Women with bleeding disorders are still navigating treatments not designed for us.

Treatment
Written By Jennifer Lynne

Discussing how women are underrepresented in bleeding disorders drug trials

There are events I know I should attend but talk myself out of. The Bleeding Disorders Foundation of Florida's Ladies Tea Luncheon has often been one of them — not because it isn't worthwhile, but because getting to Tampa from where I live is no small commitment. Depending on traffic, the drive can stretch anywhere from an hour and a half to three hours one way.

But something changed recently. My nephew moved to the St. Petersburg area, and suddenly that long drive had a second reason behind it. So this time I went — and I'm glad I did. The luncheon featured my own hematologist presenting on new treatments for bleeding disorders and how they apply specifically to women.

Here's the thing: women are historically underrepresented in drug trials for bleeding disorders. When new therapies are developed, trials typically begin with more severe cases first — and in the bleeding disorders world, that almost always means men...

Key Takeaways

  • Women and girls remain underrepresented in bleeding disorders clinical trials.

  • This lack of representation can lead to treatment gaps, dosing challenges, and unintended risks.

  • Women-centered research and data are essential for safer, more effective care.

  • Our voices, bodies, and experiences must shape the future of treatment conversations.

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This column was originally published in full on Hemophilia News Today by BioNews, Inc.

Jennifer writes a weekly column, “Hemophilia and Me,” exploring life as a woman with hemophilia B and von Willebrand disease.

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Jennifer Lynne

All opinions expressed are Jennifer Lynne's and do not reflect those of her clients or affiliated organizations.

Jennifer Lynne was diagnosed with hemophilia B and von Willebrand disease in childhood. She is the founder of Girls Bleed Too, a platform dedicated to raising awareness about bleeding disorders in women and girls, and writes the weekly column "Hemophilia and Me" for Hemophilia News Today. A marketing and journalism graduate of the University of Wisconsin–Madison, Jennifer advocates for better diagnosis, research representation, and community for women who too often go unheard in the bleeding disorders world. She lives in Florida.

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