When we think about the stakes in healthcare, we tend to think of them in terms of life and death, being sick or being healthy. The conversation is about your physical well-being and maybe your mental health — and it pretty much stops there.

But health affects so much more than your body’s biology or even just you personally, as a new survey from Gallup and Pivotal, a philanthropic group founded by Melinda French Gates, shows. That’s especially true for women, who frequently report negative experiences with the health system and ongoing struggles to get their concerns taken seriously; poor health affects the trajectory of their careers and their ability to be engaged with their families, friends, and wider community.

It starts at the doctor’s office or hospital: 51 percent of women say they have had a negative healthcare experience in the past five years, versus 39 percent of men. About one in three said that a doctor did not take them seriously when they said they were feeling pain or other symptoms, versus 21 percent of men, and 33 percent said that they either were misdiagnosed or did not receive a diagnosis. The cost of paying for care is another deterrent: 32 percent of women said they have skipped or delayed care in the past year because of the cost, compared to 25 percent of men.

“To see that half of women in the United States who sought care in the last five years came out feeling like they hadn’t gotten the help or care they needed, that’s frankly staggering,” French Gates told me in an email. “It says a lot about how little we’ve invested in women’s health and how much we expect them to just push through pain or accept uncertainty.”

And the effects of those experiences, the failure to receive proper treatment, ripples out into the rest of the women’s lives. More than half of US women, 54 percent, said they had experienced at least one health-related impact on their family life or relationships; 42 percent said their health had led to a negative effect on their career or work. It also affects their community: 32 percent said their health had affected their ability to participate in civic life.

The toll is not only physical but mental: 48 percent of women said they’d dealt with a mental health condition like depression or anxiety. And socioeconomic disparities abound. Black and Hispanic women are more likely to report being in poor or fair health. Women who have lower incomes are more likely to face career struggles because of their health than those who make more.

I had the opportunity to interview French Gates, who has made women’s health a priority in her work, over email about the survey; its findings on community engagement, menopause, caregiving, and more; and what could be done to address the problems that it reveals. Our exchange is below, lightly edited for clarity and length.

Which of these survey findings surprised you most and why?

The number of women [54 percent] who said they experienced a mental health challenge during or after pregnancy should stop us all in our tracks. And the fact that less than one in three women who sought care found it helpful is really concerning. It’s why I feel so strongly about integrating women’s mental and physical healthcare, especially during pregnancy and postpartum. Mental and physical health are so linked together.

Too much of the burden is placed on women to get answers. All of us deserve so much better.

Nearly one-third of women said in the survey that health problems limited their ability to be involved in their community. What does that look like in practice, and what do communities lose when women can’t fully participate?

Women are so often the backbones of their communities, whether they’re rallying their neighbors around a cause, leading the PTA, or serving in elected office. Without having women — and their ideas and voices — in those roles, we’re missing half of the conversation. Issues that affect women and families are less likely to get on the agenda. They’re less likely to be solved.

When a woman has a health challenge, and she has to spend so much of her time and resources chasing down answers, that makes it harder for her to show up in those spaces. We saw that in the survey: 30 percent of women said their health limited their ability to be involved in their communities. And when women couldn’t get the care they needed, that percentage doubled.

Women’s health is often talked about as a personal issue, but this data is helping us prove that it’s also an economic issue, a family issue, a community issue — it affects all of society.

Caregiving and family responsibilities prevent many women from getting medical care, in particular Hispanic and Black women. That seems to create a vicious cycle: Women are often so busy being the caregivers in their families that they neglect their own health. Eventually, they are the ones who will need care.

What do you think can be done to break that pattern? Is there a philanthropic solution? What public policy changes could be made?

Women are often taught to put themselves last and minimize their own needs. They don’t always have time to care for themselves because they’re so busy caring for others. And they might not be able to afford childcare or home health support for their aging parents. Our survey showed one in six women delayed healthcare because of their responsibilities caring for their family members. For Black women it’s one in five, and Hispanic women one in four. Too many women are facing an uphill road to even just get to a doctor’s office.

It’s possible to make it easier for people to balance healthcare and family responsibilities — but it’s going to take action from many angles. That’s exactly why I invest in both women’s health and in caregiving, and I’d encourage more philanthropists to do the same. Businesses can also support employees with good paid leave policies and reliable but flexible schedules.

But for women everywhere to benefit, we need government leaders to prioritize increasing access to affordable childcare, home health supports, and paid family medical leave. These are policies that have the support of large majorities of Americans because these are issues that affect everyone. So there’s a real opportunity here to offer meaningful help to families.

I am struck by our collective failure on menopause: Women report that they aren’t aware of menopause symptoms until they experience them on their own, that they struggle to get their doctor to take menopause symptoms seriously, and that their menopause experience has held them back in their career. What are some short-term and long-term steps we can take to address those problems?

“Right now, women need better care at critical moments in their lives.”

If more than a third of women only learn about menopause symptoms when they go through them, the system is clearly not working. Women need to learn about menopause from their doctors before they experience it. But doctors aren’t getting the education and training they need on menopause while they are in school. One doctor told me she got just one lecture on menopause across all her years in medical school. One said it was mentioned one time. They are seeking out better training but it can be hard to find. That’s why Pivotal is partnering with the Menopause Society to expand physician training on menopause so doctors, nurses, and other healthcare providers can access the information they’re looking for to better help their patients.

Because menopause isn’t just about being uncomfortable; it can also bring anxiety, heart palpitations, insomnia — significant symptoms that can really hold women back. More than a quarter of women who’ve experienced menopause or perimenopause said it made it harder to live up to their full potential at work. One in 10 had to take leave or leave their jobs entirely. That just shouldn’t be. Women shouldn’t have to step back right at the moment when they could be stepping into leadership roles.

The most immediate steps can come from policymakers, especially at the state level. They can include menopause care in insurance and Medicaid coverage and offer workplace protections to women in menopause the way they do for pregnancy, so women can get the care they need without losing their jobs. I’m also focused on longer-term solutions, like expanding training for healthcare providers and investing in research to accelerate treatment options.  

Women are at the forefront of a lot of wellness trends these days and yet, as the survey reveals, women also report encountering a ton of health misinformation on social media. Why do you think women are so often the targets of this kind of content? What can be done to point women toward and build their trust in sound medical information?

One in three women said she left an appointment without a diagnosis, with her pain being dismissed, or with no answers or next steps. You can understand why those women would start looking for information online. And because women’s health has been underfunded and under-researched, there just isn’t as much reliable information out there as there should be, which leaves a lot of room for people to come in with misinformation. Investing in credible scientific research to fill that vacuum will give both women and their doctors more information going into their appointments.

In terms of your own organization’s work, which investments are you making that you think can make progress on the underlying problems revealed in this survey?

We need to address the right now and we need to address the longer term. Right now, women need better care at critical moments in their lives.

One way we’re investing in that at Pivotal is by making it easier for women to get the mental healthcare they need during and after pregnancy. So we are investing in integrated models that put mental and physical healthcare under one roof. I visited a health clinic in Alabama earlier this year where they identify issues like depression and anxiety right at the outset and then help the mom all the way through her pregnancy care, all in the same place. That model is something we strongly believe in.

Better care for menopause will require better training, which we are thinking about in both the immediate and long term. I mentioned that we’re making more menopause training available to doctors who are currently practicing. That is something I’m really excited about because I’ve heard from physicians who really want to better support their patients and are looking for better information so they can do that. And longer-term, menopause needs to be a much bigger part of the curriculum at medical schools moving forward.

Another longer-term focus of ours is trying to make up for decades of lost time in research. We are funding medical research focused on how diseases specifically impact women, in partnership with an innovative organization called Wellcome Leap. They are working to accelerate progress in women’s health on everything from autoimmune diseases to cardiovascular disease in years, not decades, which is how long health breakthroughs usually take. That’s the kind of urgency women need and deserve.

A decade ago, insulin became the poster child for America’s out-of-control drug prices. The 2017 death of Alec Smith, who was rationing his insulin before he died, and repeated price hikes for a 100-year-old medication (the patent for which was originally sold for $1 to a university to prevent it from being exploited commercially) sparked widespread outrage that a lifesaving medication could be unaffordable to the people who depend on it to survive.

And then politicians actually acted. Starting with a Colorado law passed in 2019, states began passing laws capping the out-of-pocket costs for many people who take insulin; 27 states (plus Washington, DC) now have such a policy. Then in 2022, Congress included a provision in the Inflation Reduction Act that established a $35 per month cap on insulin prescriptions for people on Medicare. Given the national response — drugmakers also made splashy public announcements about reducing the cash price that uninsured people pay — you would be forgiven if you thought this was the one health care cost crisis that the US had genuinely managed to solve.

But the diabetes community has a dire warning: It’s not over. Millions of people continue to struggle to pay for their insulin and having their long-term health put at risk because of, in the words of one advocate who put it bluntly, pharmaceutical greed.

“There has been so much attention and promise to action around the insulin price crisis. … There has been so much action,” said Shaina Kasper, executive director of T1 International, a global nonprofit that advocates for people with diabetes. “And shockingly, frustratingly, critically, the data from our 2024 survey showed that the rationing rates were worse than ever. Ultimately we’re facing such immense and monstrous corporate greed. … When we put a Band-Aid on one hole, another one’s going to find a way to pop out and keep profits high.”

Fixing the insulin crisis will require a multifaceted approach: drug pricing reform, insurance mandates, and possibly even public manufacturing. Out-of-pocket caps, Kasper said, were always a temporary fix for a very broken system. There is still a lot more work to do.

Why so many Americans still struggle to afford insulin

Both national and local surveys indicate that the policy changes of the past decade have not had the desired effect.

A study published last year from researchers at the Yale Diabetes Center found that people treated there were rationing insulin at the same rate in 2024 as they were in 2017; about one in four people reported some rationing due to the cost of the drug in both years. When you added in the people who rationed because of insurance delays or supply limits, more than one in three people — 38 percent — were still having trouble keeping this lifesaving medication on hand in 2024. A 2024 T1 International survey likewise found that nationwide, 34 percent of the Americans who use insulin reported rationing the medicine. (About 8.4 million people in the US rely on insulin to survive.)

Dr. Kasia Lipska, an endocrinologist and researcher who treats patients at the Yale Diabetes Center and who co-authored that study, was surprised by their findings.

“I was surprised because I’ve been looking at the policy and advocating for policy change; you think things are moving, they should be really improving,” Lipska said. “But if I talked to the nurses and our staff at the Yale Diabetes Center, they told me, ‘Of course they haven’t changed. We’re still hearing these stories.’”

How could this be? The explanation is multifaceted, according to Lipska and Kasper. 

“There’s just still a lot of holes in one who is covered by various protections and then how they’re covered and how they access this,” Lipska said. “It’s not as simple as just showing up at the pharmacy and asking for your insulin, and the sticker price is there, and that’s what you pay. It’s extremely complicated.”

For starters, millions of Americans remain uninsured and have to pay the cash price for drugs. While drugmakers make flashy announcements about helping those people, the process of enrolling for savings cards to get those lower prices can be a nightmare; one congressional investigation found in 2023 that uninsured patients were still paying an average of nearly $100 for insulin despite Eli Lilly’s pledge that its generic product would be available for $25 per vial. Even if you manage to get your discount card, the same investigation found that Lilly introduced several restrictions based on geography and needs, and that the specific insulins that are subject to these voluntary price caps are often out of stock at the pharmacy when people go to fill a prescription (while the more expensive brand name version is consistently available).

And then there are the loopholes in those existing federal and state laws. The federal $35 cap applies only to Medicare; the private insurance that covers half the country is excluded. (There have been bills proposed to extend the cap to private coverage, but they have not gone very far in Congress.) The state laws that do exist typically apply only to small-group and individual plans that are subject to state regulations; larger self-funded plans are exempt from state mandates and currently have no enforced limit on out-of-pocket insulin costs. One national estimate found that around 775,000 people who use insulin and had private insurance were protected in 2025 by the caps in states where they’d become law. But more than 1 million people in those states were not, nor were the 2.1 million commercially insured insulin users in states without a cap.

Even for people who benefit from the mandatory out-of-pocket caps instituted by Medicare and state laws, some of them still struggle to come up with $35 a month, given all of the other price hikes Americans have faced since the pandemic. They may have to navigate a complex process in order to actually receive the promised discount. And while a $35-per-month cap sounds straightforward, in practice, people can still face higher costs. Each individual person requires a unique amount of insulin and, for some of them, they might need two different kinds; the pharmacy may not have the right version and will make substitutions that lead to higher costs. That’s how one of Lipska’s patients ended up paying $140 per month for his insulin — despite being on Medicare.

“These things really add up…and frustrate people,” she said, “because what seems like a great idea is not actually how things work on the ground.”

The consequence is that, despite all the legislative activity and self-congratulations, millions of Americans are still at risk of serious health problems because they can’t get insulin.

The worst-case scenario is what happened to Alec Smith: Somebody is forced to spread their insulin so thin that they put their life is in danger. When diabetics have their blood sugar spike without insulin on hand, they can go into diabetic ketoacidosis, “which literally means your blood is turning into acid,” Kasper said. “I can speak from experience: it feels like you’re dying.”

To recover from an episode, they may have to go to the emergency room and end up taking even more insulin while eating in order to get their body back to equilibrium. But even short of an emergency, Kasper said, people who resort to rationing insulin can experience significant side effects. Prolonged high blood sugar due to rationing could lead to serious vision and nerve problems that were supposed to be a thing of the past once insulin became available.

Those were the scenarios that lawmakers wanted to prevent as they tried to make insulin more affordable. But they remain a very real threat for too many people.

The big idea that could make insulin truly affordable

If there’s good news to be found, it’s that the advocacy community is not giving up. They are sounding the alarm about the ongoing affordability crisis and urging Congress to act. But they do worry that the issue has become less urgent: The truly comprehensive mandate for insulin out-of-pocket caps, which is typically introduced every Congress, was delayed this time. “This year, neither bill was introduced for over a year, and it was very concerning,” Kasper said.

But they are also placing bets on something much more profound than a price cap: the government itself procuring or even producing insulin and making it available to people at the lowest possible cost. 

“This idea that medicines should be for people and not for profit I feel like is really catching,” Kasper said. 

Some states are taking baby steps in that direction: Oklahoma passed a bill this year that would offer government funding for private companies that pledge to produce insulin and sell it at a low price. 

Others are going bigger. As I reported in 2023, California has launched a program that is eventually intended to lead to government-owned facilities producing insulin to be sold on the cheap, though it will take years until publicly owned production begins. The New York state Senate approved a similar plan this year, although funding for it didn’t make it into the state’s budget. Kasper said that she is optimistic the project will make it into next year’s spending plan, and says a lot of work is currently being done to ensure it happens.

In the future, public manufacturing could also help to address the supply problems that continue to pop up. There are only three insulin manufacturers in the US right now. As those for-profit pharmaceutical companies place more emphasis on GLP-1 production — which often takes place in the same facilities as insulin production — nonprofit initiatives could fill in the gaps.

“In this time of tariffs even, with these concerns around shortages and rising prices and the corporations having this monopoly and price gouging ordinary Americans for decades now, as we’ve seen on insulin, let’s just make it ourselves,” Kasper said.

This is a long-term vision; if you need help right now, T1 International has resources to help people get health insurance, access discount programs, and even find emergency insulin. But a more affordable future for insulin will only be possible if lawmakers feel compelled to act. Public outrage created one round of reform, but the risk of political complacency is real. So if you care about this issue and want to get involved, T1 International also has a tool kit for people who want to advocate for policy changes, including around public pharma.

“The general communication that we’ve been hearing is that the insulin price crisis is over,” Kasper said. “Everyone should have access to a $35 copay for insurance. As the data shows, as we’ve been talking about, that is just not true.”