What's actually happening in women's health research

The consumer conversation has never been louder. The federal research behind it is being quietly dismantled. Here's what I saw at two conferences, what the facts say, and what we can do about it.

I just spent five days at two women’s health conferences.

Three days at the NIH Pathways to Prevention (P2P) workshop on menopause. Two at the Livelong Women’s Health Conference. The audiences were electric. Something has shifted in the broader conversation. Menopause is on magazine covers. Podcasts about it have audiences in the millions. Patients are walking into their doctor’s office with specific questions and specific asks.

Everyone was waiting for the next wave of data. New HRT safety and efficacy research. Updated breast cancer treatment protocols. Real options for survivors stuck between “you can’t take hormones” and living with debilitating symptoms they’re told to accept.

Here’s what I didn’t hear.

Anything new.

The same four studies. Still.

Consistently, these four studies kept showing up. WHI. Stockholm. HABITS. KEEPS. Most from the 90s through early 2010s. Still the spine of the conversation in 2026.

WHI. The Women’s Health Initiative. Launched in the 90s. Reported in 2002. The study that changed what a whole generation of women did or didn’t take at menopause, basically overnight. Estrogen Matters has been laying out the other side of the story for years. The 20-year follow-up data doesn’t show the increased risk of breast cancer or all-cause mortality the 2002 headlines implied, especially for women starting HRT closer to menopause. That correction still hasn’t caught up with the cultural memory.

Stockholm Trial. 1997. Breast cancer survivors on HRT. 10-year follow-up. No significant increase in recurrence.

HABITS. Swedish trial. Stopped early over reported increases in breast cancer recurrence. The contrast with Stockholm is still unresolved. The debate turns on progestogen type and dose, questions a properly funded research program should have settled a long time ago.

KEEPS. The Kronos Early Estrogen Prevention Study. Reported in the 2010s. Looked at women closer to menopause, which is the thing WHI didn’t do. Showed cardiovascular benefits and safety in that window.

Four studies. Most of them 20 to 30 years old. Still the state of the art in 2026.

And it’s not just the studies. Everything else was thin too.

A lot of talk on hormones. Very little new anywhere else. Good info for newbies.

Exercise. Nutrition. Sleep. Stress. The daily-life levers that actually shape how a woman ages. All of it did get a voice. However, the research the speakers could cite was thin. Male subjects, extrapolated to women. Small female samples that nobody has replicated at scale. General-population advice that doesn’t account for how a female body actually changes across perimenopause and postmenopause. In fact, the first study on women’s health didn’t even start in the United States until 1993.

We still don’t have strong, female-specific, long-horizon data, and women are asking their doctors questions. The research to answer them hasn’t been funded at anywhere near the scale needed.

The HRT conversation had its own gaps

Most of the airtime went to hormones. Estrogen is life, so take it. Estrogen receptors are everywhere in the body, which is why it affects so many systems at once.

Start HRT in perimenopause or within 10 years of menopause onset and the cardiovascular benefits are real and the safety is reasonable. After that window, if arterial plaques have already formed, estrogen can actually increase plaque buildup rather than reduce it. The same dynamic may impact brain plaques and cognition. More research is needed; some is underway.

Estrogen supports bone health at any age. And everyone should take vaginal estrogen, even women with a history of hormone-positive breast cancer.

That’s true as far as it goes. What could have received greater play time:

Bigger, better-funded research on the questions that still aren’t settled. Whether bioidentical micronized progesterone carries the same elevated breast cancer risk that synthetic progestins do (the existing data up to five years suggests it doesn’t, but no long-horizon trial has been funded to confirm it). Real, evidence-based options for women who are not typical candidates for HRT at all, including breast cancer survivors and women with clotting disorders or high-risk family histories. Updated guidance for survivors, instead of decisions still extrapolated from Stockholm and HABITS in the late 1990s.

These are not unanswerable questions. They are unanswered ones. And they’re unanswered for the same reason the rest of women’s health is stuck. The research to settle them hasn’t been funded at the scale it would take. The funding environment for women-specific research is shrinking, not growing. And the language being used to describe that research is being scrubbed from federal grant applications in real time.

That’s the through-line. Every gap in the hormone conversation, every gap in the exercise and nutrition advice, every gap in survivorship guidance, traces back to the same root: the research base is too thin, and the system that funds new research is making women’s-specific work harder, not easier, to do.

The speakers did give answers to the “what am I supposed to do” question. Weight training. Anti-inflammatory eating. Vaginal estrogen for nearly everyone in midlife. HRT within the appropriate window for most women who can take it.

The speakers were also direct about the gaps behind those answers, and the gaps are different depending on which answer.

The exercise, nutrition, sleep, and stress advice draws heavily on research that was built on male subjects, with female biology meaningfully different. The hormone advice draws on the same handful of trials we’ve been citing since the 1990s and early 2000s. Two different gaps.

The consumer story has never been louder

Here’s the part that makes this strange.

The public conversation about women’s health right now is the biggest it’s ever been.

Menopause is a business. Telehealth platforms, HRT startups, diagnostic kits, clinics, supplements, coaching programs, books, podcasts. A whole layer of content about what women can do to live longer, healthier lives. How to advocate for yourself at the doctor. What to ask about HRT. Which treatments breast cancer survivors should consider.

Every week it seems there’s a new podcast episode, a new influencer post, a new branded campaign, or a new piece of journalism about women’s midlife health.

This part is genuinely good. It’s a long-overdue correction to decades of dismissal.

And it’s exactly what makes what’s happening underneath so hard to see.

The underbelly

Here’s what I didn’t hear anyone say out loud from the stage.

Since late January 2025, federal science agencies have been screening grant proposals against a list of flagged words. NSF, NIH, CDC, the VA.

Roughly 100 terms on the NSF list alone. Among them: “women,” “female,” and “gender.”

“Male” is not on the list.

Odd that the one flagged word that describes biological sex applies to greater than 50% of the population, while the word that describes the other biological sex is fine.

Researchers were given as little as 24 hours to rewrite grant titles or risk non-renewal. Per an analysis by former NIH official Jeremy Berg, the titles of more than 700 multi-year NIH grants were changed in 2025 alone to remove flagged language. (Reported by STAT, October 2025.)

When “woman,” “women,” and “female” become politically risky words in federal grants, three things happen at once.

1. Some research stops outright.

Some studies have been halted or defunded with no path to recover them. A doctoral fellowship at Columbia University studying the biomechanics of uterine fibroids was terminated. DOGE separately canceled an NIH grant for a study developing a new tool to detect and treat fibroid tumors, the kind that disproportionately affect Black women. Both stories were reported by The 19th and PBS NewsHour.

Topics like pregnancy-related death, endometriosis, and infectious diseases contracted in pregnancy are at acute risk for the same reason: they inherently use the words on the flagged list, and there is no way to disguise them.

A careful note on menopause specifically. Menopause research as a whole is not halted. The Women’s Health Initiative extension is running through 2026 (no funding after 2026). The Study of Women’s Health Across the Nation (SWAN), funded by the National Institute on Aging, is still active and has been since 1994. NIH’s Pathways to Prevention workshop (the one I just attended) brought federal agencies together to identify research gaps in the menopausal transition. The FDA approved elinzanetant, a new non-hormonal treatment for vasomotor symptoms, in October 2025.

What’s happening is subtler. Menopause research exists, but the federal funding infrastructure around it is shrinking, the language describing it is being stripped from new grants, and the long-term studies that make it valuable (WHI being the obvious one) are being destabilized. The research survives, but the structural support for it is weakening at the same time the public demand for it is at an all-time high.

That tension, between a conference like NIH P2P convening federal agencies on menopause while federal grant language around women is being scrubbed, is the contradiction I want to put in front of you.

The easy version of the story says “the work doesn’t stop, it just gets renamed.” That is too forgiving. Per the Association of American Medical Colleges, 777 NIH grants were terminated by May 5, 2025, representing more than $1.9 billion in medical research funding. That isn’t distortion. That’s termination.

2. Some research gets distorted to survive.

Abstracts get scrubbed. Grant titles get rewritten. Program officers tell researchers studying sex differences in drug response, women’s aging, or maternal health to strip the language that accurately describes their work.

A study that was going to ask “how does this drug affect women differently than men” becomes a study on “patient outcomes.” The subjects may still be women. The scope may or may not be preserved. The record no longer says so.

Two years from now, nobody searching the biomedical literature for “women’s health” will find that paper.

3. Women’s health is being scrubbed out of the record.

This is the damage almost no one names out loud. When you scrub “woman” and “female” from thousands of grant titles and abstracts at once, you don’t just hide a list of studies. You erode the category.

Future researchers searching the NIH RePORTER database will have a harder time finding the work. NCI project listings will carry less women’s-health-specific signal. Meta-analyses filtering by sex will aggregate less accurately. Advocates making the case for more funding will have a thinner recent evidence base to point to. Policymakers asking “what do we know about women’s long-term health right now” will get an artificially narrow answer.

The science that does continue loses its ability to be connected, built on, or defended as a field.

The bodies on the exam tables are still women. The record of what we know about those bodies is being scrubbed while they’re on the table.

How this impacts everything people are talking about

Consumer media and private companies will still talk about women’s health. The federal science base underneath them is the part being dismantled. It’s what the consumer and private layers report on, sell into, and build businesses around.

The menopause podcast? Its guest is citing NIH-funded research from a decade ago.

The HRT telehealth company? The safety data it markets against is built on NIH-funded work from the 90s and early 2000s.

The breast cancer survivorship guide? Most of the recommendations in it trace back to federally funded clinical trials.

The influencer post about “five things you need to know about perimenopause”? Most of those five things come out of research paid for by NIH and NCI over the past 30 years.

Consumer media cannot generate new biomedical science. Private companies cannot run 20-year longitudinal studies on tens of thousands of women. That is not what they are built for.

What they can do is translate, package, sell, and advocate. That work is downstream of the basic science.

When the basic science stops, the public conversation doesn’t fall silent the next day. It lives off the accumulated stockpile of past research for years. Then, slowly, it runs dry.

The content gets repetitive. The “five things you need to know” stays the same five things. The HRT guidance stops updating. The breast cancer survivorship protocols freeze at the 2020s consensus. The next generation of women, the one currently in their 20s and 30s, arrives in menopause with the same data their mothers had.

That is what the underbelly does to the visible layer. Slowly and then all at once.

Private funding cannot fill this gap

“Can’t private philanthropy and private companies just pick up what NIH is dropping?”

I get this question a lot. The short answer is no. Private funding and government-funded research do different jobs. They are not substitutes. They never were.

Scale. NIH is roughly $48 billion a year. All US private medical R&D philanthropy combined is less than 3 percent of total medical R&D funding. BCRF’s record year of $74.75 million is extraordinary for a foundation and tiny next to a single NIH institute. There is no realistic path where private dollars match the federal scale.

Time horizon. Private funders commit to 1-to-3-year grants. NIH funds 5-to-7-year grants as standard. The Women’s Health Initiative has been running since 1991. The Nurses’ Health Study since 1976. The Framingham Heart Study since 1948. No foundation, VC firm, or public company can commit to a 35-year study. VC funds exit in 10 years. Pharma answers to patent windows. Public companies answer to quarterly earnings. Only governments have the institutional permanence to fund the decades-long work that makes long-term women’s health knowledge possible.

Incentive. Private funding wants ROI. VC wants a startup that can exit. Pharma wants patentable drugs. Foundations fund their specific mission. None of these models fund basic science, which is the investigation of mechanism without a clear commercial outcome. Most major drugs, including Herceptin, trace back to basic science discoveries that no private entity would have funded at the time because there was no product to sell for a decade. Basic science is, by definition, work whose value is unknown until much later. No rational private funder invests in that. That is not a criticism, it is how private funding is supposed to work.

Infrastructure. NIH funds the training grants that produce the next generation of scientists. NIH funds the shared databases, the biospecimen repositories, and the clinical trial networks that every lab in the country uses. NIH funds the replication work that turns novel results into settled science. Private funders almost never pay for this. It is not glamorous. It does not make a foundation feel relevant. It is the unglamorous backbone that makes everything else possible. Remove it and the visible layer collapses.

Independence. Commercial funding comes with commercial bias. Pharma-funded trials are more likely to produce positive results for the funder’s product. Industry-funded research on sugar, tobacco, and food science has a long and well-documented history of shaping outcomes. NIH-funded research is not perfectly independent, but it is several degrees more so, and that matters a great deal when the questions are “is HRT safe for breast cancer survivors” or “does this supplement actually do anything.”

Why this hits women’s health especially hard. If we leave women’s health to private funding, we already know what we get. The consumer layer thrives. Menopause startups, HRT telehealth, supplements, coaching, diagnostics, podcasts. All real, all growing, all good. But none of it funds the questions women are actually asking their doctors. The long-term cognitive effects of estrogen decline. Safety data on bioidentical hormones beyond five years. Non-hormonal survivorship alternatives that cannot be patented. Sex differences in drug metabolism. Those questions cannot be commercialized. They are public health questions. And public health questions only get answered at scale when the public funds them.

Philanthropy is bridge support. It keeps some labs open during the disruption. That is real, and it matters. But bridges are short. They get you across a gap. They do not replace the road on the other side.

Private companies are translators. They take existing knowledge and deliver it. They cannot generate the underlying knowledge at scale.

The math does not work. It was never going to work.

More facts, women’s health specifically

Here’s what’s actually happening in women’s health research, with sources. Everything in this section is either women-specific or names the women-specific consequence directly.

Language enforcement, directly targeting women’s research:

• Roughly 100 terms on the NSF flagged keyword list. The women-coded ones: “women,” “female,” “gender,” “disparities,” “underrepresented.” “Male” is not on the list.

• More than 700 NIH grant titles were rewritten in 2025 to strip flagged language (Jeremy Berg analysis, via STAT, October 2025). The most commonly stripped words were the women-coded ones above.

• Researchers given as little as 24 hours to rewrite grant titles or risk non-renewal.

Terminated research, women-specific:

• 17 breast-cancer-specific grants terminated at the National Cancer Institute in 2025. This is out of 181 NCI grants terminated overall, making breast cancer the third most impacted disease category (behind general oncology and colorectal cancer).

• Joan Brugge’s $7 million NCI breast cancer grant at Harvard, frozen for five months starting in April 2025.

The Brugge story:

In April 2025, a seven-year, $7 million NCI breast cancer grant held by Joan Brugge at Harvard was frozen during the broader Harvard funding dispute. It stayed frozen for five months.

By the time partial funding was restored in September, the lab had lost seven of its 18 staff members. Staff scientists, postdocs, graduate students. With her grant frozen and her team gone, Brugge missed the deadline to apply for the multi-year renewal.

NIH renewals are competitive. To submit one, a lab has to show recent productive results, preliminary data for the next phase, and a stable team to execute it. None of that is possible when your grant is frozen for five months and you’ve lost a third of your lab.

And if she had somehow made the deadline? NCI grant funding rates were on track to drop from 9% to 4% in 2025. The application would have been evaluated in the same political environment that flagged her grant in the first place.

A Harvard researcher running a breast cancer lab that had been doing this work for decades lost a third of her team and a full renewal cycle in one year. You do not rebuild that in one year.

The Women’s Health Initiative, the canary:

The Women’s Health Initiative has followed more than 160,000 women since 1991. It’s the largest and longest-running federal study of women’s health and is credited with preventing an estimated 126,000 breast cancer cases.

In April 2025, its funding was cut. Public outcry brought it back within days. HHS said NIH had “exceeded its internal targets” for contract reductions.

The initiative’s future beyond early 2026 is not secure.

A study tracking 160,000 women for three and a half decades, credited with preventing thousands of cases of the most common cancer in women, was not safe.

The Herceptin question (breast cancer):

A 2025 Science study found that more than half of FDA-approved drugs since 2000 depend on NIH-funded research that likely would not have occurred under a 40% smaller NIH budget. This finding covers drugs across all conditions, including breast cancer treatments.

Herceptin, the standard HER2-positive breast cancer drug, sits at the edge of that window. Approved in 1998, it was built on decades of NIH-funded work on the HER2 oncogene, much of it done in the 1980s in labs that depended on NCI support. The drug that saves a woman in 2026 was made possible by grant applications written in a different decade.

The question isn’t whether today’s drugs exist. They do. The question is what won’t exist in 2050 because we defunded the work in 2025.

Why this should matter to every single person reading this

Every human being ever was nurtured, for the first nine months of their life, inside a woman’s body.

EVERY SINGLE ONE.

Our first environment. Our first nutritional baseline. Our first immune education. Our first hormonal bath. All of it, her.

If her body is under-studied, under-treated, and underfunded, the health of the next generation is built on shaky ground from day one.

When we underfund menopause research, we are not just shortchanging women in midlife. We are shortchanging cardiovascular outcomes, bone health, cognitive aging, sleep, and the entire second half of life roughly half the population will live through.

When we freeze a $7 million breast cancer grant, we slow down every downstream decision a clinician has to make about HRT, survivorship, and recurrence risk.

This is not a niche women’s issue. It is a foundational human health issue with a 100% match rate to the population at birth and a 50% match rate for the back half of life

What we can do about it

There are concrete actions that matter, and some of them are already working.

1. Contact your senators about NIH and NCI appropriations.

Federal research funding is set by Congress through annual appropriations. The proposed 40% NIH cut and the 37.3% NCI cut for FY2026 are not final. Senators, especially those on the HELP Committee and the Appropriations Committee, hear from constituents about NIH funding. Specific asks: restore NIH to FY2024 levels, reject the proposed NCI cut, restore multi-year grant commitments for breast cancer and women’s health research.

2. Support the Society for Women’s Health Research (SWHR).

SWHR is the policy-focused advocacy organization doing sustained work on Capitol Hill for women’s health research. They’ve been at the center of the WHI fight and the broader NIH advocacy effort. They need members and donors.

3. Fund direct research.

BCRF (Breast Cancer Research Foundation) announced a record $74.75 million for 2025-2026, explicitly positioning itself as bridge support during the funding disruption. Susan G. Komen is continuing its Career Catalyst and Career Transition Awards. Prevent Cancer Foundation, Conquer Cancer, and PHASE ONE are funding bridge grants. This money matters, and it matters most when it comes from individuals, not just institutions.

4. Use the words.

“Women.” “Female.” “Menopause.” “Hormone replacement therapy.” “Breast cancer.” “Uterine fibroids.” “Endometriosis.” Use them in writing, in your work, in the questions you ask your doctor, in the content you share.

The federal record is being scrubbed. The public record does not have to be. Every time “women” appears in a piece of journalism, a social media post, a consumer product description, a clinical handout, we push back against the erasure.

5. Participate in research.

Long-term studies like the Women’s Health Initiative and NIH’s All of Us program depend on participants. If you qualify and can contribute, do. Clinical trials for breast cancer, endometriosis, menopause treatments, and related conditions are running through academic medical centers and BCRF-funded labs right now.

6. Support the journalism doing this reporting.

STAT, Science, Nature, NPR, KFF Health News, WBUR, The 19th, and others are the reason this story is documented at all. Subscribe, share, tip, pay.

7. VOTE on science funding.

Federal research funding is a political issue now, whether we like it or not. Candidates who support NIH appropriations should know it’s a voting issue for you.

8. Share facts, not just feelings.

When you talk or post about this, lead with the specifics. 181 grants. 7 staff at Brugge’s lab. $7M frozen for five months. 160,000 women in the WHI. 700 grant titles rewritten. 9% to 4% NCI funding rate. $2.7B cut in Q1 2025.

The specifics make this harder to dismiss.

Where I’m landing

I left both conferences genuinely encouraged by the people in the room.

And clear-eyed about the gap between the energy on stage and what is actually happening to the science we need.

The consumer layer is thriving. That’s real. I’m glad for it. I also work in it and am rooting for all of it.

The underbelly, the federal research base that most of what we see on the surface ultimately depends on, is being dismantled in ways that won’t show up in our daily feeds until it’s already too late.

We still have time to push back. Not forever. A 20-year longitudinal study that gets cut in 2026 and restarted in 2030 is not the same study. A lab that loses a third of its team this year doesn’t get them back next year. A research program that erased “women” from its grant language for three funding cycles doesn’t just re-add it in a fourth.

The window for this argument is now.

I’ll keep writing about this. Next piece: what clinicians are actually doing with the data we do have, and where the newest private research might plug a real gap.

If that’s your world, or if you just care, subscribe and stick around.

Sara