Cut Off Again: Women’s Health Gets Defunded-and So Does Our Future
The U.S. just told half its population their health doesn’t matter—again.
We’ve seen this play before.
Every time women inch closer to visibility in medicine, the spotlight gets pulled. This week, the federal government pulled the plug on the Women’s Health Initiative (WHI)—one of the most ambitious and vital long-term studies ever conducted on women’s health. Translation? They just unplugged the main power source to decades of data, insight, and hope.
It’s more than a funding cut—it’s a strategic erasure.
A Brief History of Getting Ignored
Let’s rewind:
Before 1993, women were routinely excluded from most medical research. Drug trials? Done on men. Heart disease studies? Done on men. Autoimmune research? Men. Despite women being the majority of patients in many of these cases.
It took Congressional intervention—literally a law—to force the National Institutes of Health to include women in clinical trials. That’s the NIH Revitalization Act of 1993, and yes, it took until the Clinton era for science to acknowledge that women have bodies worth studying.
The Women’s Health Initiative launched in 1991 with over 160,000 women enrolled. Its findings revolutionized medicine: proving that hormone replacement therapy increases the risk of breast cancer, stroke, and heart disease. This changed prescribing guidelines worldwide. It literally saved lives.
And now, in 2025? Poof. Gone. They’ve defunded the future.
The Pattern: Women = Collateral Damage
When budgets get tight, women’s health is first on the chopping block. We saw it with:
Cuts to Planned Parenthood, even though the majority of their services are cancer screenings, STI testing, and routine care—not abortions.
Underfunding for conditions that primarily affect women—like Ehlers-Danlos syndrome, endometriosis, and fibromyalgia. All historically dismissed as “hysteria,” “anxiety,” or “just stress.”
Gross underinvestment in autoimmune disease research—despite the fact that 78% of autoimmune patients are women.
Medical textbooks still often use male anatomy as the default. Women’s symptoms of heart attacks, autism, and ADHD? Frequently missed. Why? Because they weren’t studied.
Zebras Know What This Feels Like
Zebra readers—this is not new to us. The rare disease, chronic illness, and EDS community has lived this marginalization. We’ve begged for inclusion in clinical trials. We’ve been told our symptoms are “just anxiety.” We’ve been offered antidepressants instead of answers.
We are the receipts that show what happens when medicine ignores women.
And now, the WHI—our one stronghold of longitudinal women’s data—is being shelved. Not because it failed. But because we did.
What This Means (And Why It Should Make Your Female Parts Furious)
This isn’t just about women over 50. It’s about every single person with a uterus, every zebra, every caregiver, every provider trying to make sense of long-term health trends that only the WHI captured.
Without that data, you can forget:
Better treatment models for menopause
Safer cardiovascular protocols for women
Understanding why autoimmune disease hits us harder and earlier
The intersection of hormones and neurological disorders (like POTS and MCAS)
This data isn’t “nice to have.” It’s the foundation of equitable care.
What Do We Do Now?
Raise hell. Email, call, and tag your reps. Demand reinstatement of WHI funding. Don’t let this slide under the radar. Join me in DC to advocate on The Hill on June 30th with BJCSF.org. Comment for details.
Support researchers (especially female hEDSresearchers such as Dr. Cortney Gensemer at MUSC’s Norris Lab with a donation. Or push forward continuing women’s health studies through other fave nonprofits and patient-led orgs.
Document your story. Patient-reported outcomes are now more critical than ever. They can’t erase us if we publish ourselves.
Share this post widely! Let the world know that once again, science is sidelining 51% of the population—and we’re not going quietly.
Final Thought from the Editor
The Women’s Health Initiative was never perfect—but it was ours. And now we’re expected to settle for “less-than” again.
Zebras, it’s not enough to just be aware—we need to be angry, organized, and loud.
Because the real disease here isn’t just EDS or autoimmune disorders. It’s systemic sexism in science.
Subscribe. Share. Shout Back.
Zebra Underground isn’t here to make things palatable. We’re here to expose the real stories the medical system wants you to ignore or forget.
Want to fight back? Start with your voice. Join the herd to be heard.