Health insurance costs are up. Women and LGBTQ+ people are paying the price

This story was originally reported by Shefali Luthra, Barbara Rodriguez and Orion Rummler of The 19th. Meet Shefali, Barbara and Orion and read more of their reporting on gender, politics and policy.

Their health care premiums have skyrocketed. And now, women and LGBTQ+ people across the country are scrambling.

Some are pushing off paying for retirement, or dipping into their savings. Some are looking for extra work to afford plans that they aren’t sure will actually cover their health care bills. And some are planning to go without insurance, hoping they won’t get too sick to manage medical expenses on their own.

The chaos and uncertainty are the result of a monthslong impasse, after Congress let subsidies lapse that would keep down the price of health insurance on the Affordable Care Act’s individual marketplace, a key source of coverage for millions of people who don’t get insurance from work or through government programs like Medicare or Medicaid.

Polling data from KFF, a nonpartisan health policy research, polling and journalism organization, found that women are more likely to say that they cannot afford the increase in health care costs. Another KFF poll found that 52 percent of LGBTQ+ adults say it’s difficult for them to afford health care costs. Both women and LGBTQ+ people typically earn less than straight men, and they are at greater risk of many chronic health conditions that make going without coverage particularly burdensome.

Though lawmakers are still trying to make a deal that might restore the subsidies, hope is fading that they will be able to negotiate a renewal this year. But Americans have already had to make choices about what kind of insurance they will use this year — if they stay insured at all.

The 19th spoke with six people about how they are navigating rising health care costs right now.

Rena Bumbray-Graves

Rena Bumbray-Graves is a home care worker in Virginia, a job largely held by Black women and Latinas. At 63, she’s two years removed from Medicare eligibility. Last year, she purchased health insurance for both herself and her husband through the individual marketplace, paying just over $500 per month.

She received a letter this month notifying her about her change in payment due. To keep their insurance, she would pay more than $1,300 each month.

“I was shocked, to say the least,” she said.

KFF polling suggests that Black women previously receiving subsidies, like Bumbray-Graves, are more likely than White women to say they will look for another job that might provide health benefits than to stick with a marketplace plan they can no longer afford. But that isn’t possible for her, she said.

Home care work typically doesn’t come with insurance benefits, something true of many other professions that predominantly employ women of color, such as nail salon work. The women who make up those professions are now more likely to be struggling to find insurance they can afford.

Her husband’s job as a freight driver offers an insurance benefit, but in the past, she said, that coverage cost far more than they could reasonably pay: close to $1,500 every month. She’s waiting to see what that might cost this year — and if it’s that much again, she said, she’ll go without insurance, despite having multiple chronic conditions that require regular medication.

“I’m not going to sign off on something that's going to make us struggle,” she said.

–Shefali Luthra

Kristin Fuhrmann-Simmons

Kristin Fuhrmann-Simmons, 51, saw her insurance premium skyrocket this year — had she kept her old plan, her family’s monthly payment would have gone from $11 to more than $2,000.

She needs insurance: Fuhrmann-Simmons has multiple sclerosis, a neurodegenerative condition substantially more common in women and that requires careful treatment. She’s also treating her menopause symptoms with hormone replacement therapy, a treatment that could cost hundreds of dollars monthly without coverage.

Already, women are more likely than men to struggle with the price of prescription drugs, and to skip or delay health care because of their cost. The disparity in simply affording health care costs increases for women with chronic conditions — especially those like MS, which predominantly affect women.

The Affordable Care Act is the only real option she has. Fuhrmann-Simmons is a digital media consultant and art teacher in Maine, and her husband is a social worker. Neither of their jobs provide benefits. Though her husband briefly looked into a job offer that might come with insurance, she said, the pay cut combined with the cost of coverage would still set them back.

Instead, she and her husband purchased a less comprehensive marketplace plan, one that covers the two of them and their eldest daughter, who is 23. (Their younger daughter is able to receive insurance through a plan offered by her college.) The deductible is $7,500 per person; they’re still paying $500 a month.

She is trying to figure out how they’ll make everything work. The family has already drained much of their savings, including her husband’s retirement account, to pay for her medical treatments. Fuhrmann-Simmons recently sat down with a local credit union for financial planning advice on how her family’s income needs to grow if they want to make ends meet. The figure they settled on — $2,000 more every month — is why she’s looking to find more work.

Even that is complicated. With her condition, she said, she doesn’t have the ability to work full-time.

“There’s nothing else to cut away. There’s no other pound of flesh to take,” she said. “I’m hopeful that it is not the new normal — that people won’t play with my life as if it’s some sort of chip in their political game.”

-Shefali Luthra

Rei Willingham

Rei Willingham, 35, is planning to go uninsured this year — again. As a disabled person, that means shopping for deals on her most expensive medication.

She feels like the system is leaving her behind.

“The health care system appears to just be getting worse,” she said. “Especially for LGBTQ people in the South, where our states are not supporting us at all, it feels like it’s one thing after another for the financial burden we have to bear for being both poor and gay or trans.”

Willingham, who is nonbinary, lives in North Florida with her wife. Their household income is about $30,000 to $40,000 a year. So when they saw the $400 price tag for marketplace insurance this year, they both knew they couldn’t afford it. And although Bronze plans offered lower premiums at $100 a month, they gave Willingham little to no coverage. Those cheaper plans also came with deductibles for emergency care that went over $10,000, which would easily bankrupt her.

“I was like, I’m not going to be getting insurance this year,” she said.

The plans are more expensive now than when she shopped on the marketplace last summer, after quitting her job and losing her employer’s insurance. She wasn’t able to put the required documents together to enroll last year, since she couldn’t access her employee portal at her old job. And now, the costs are too high. So it’s cheaper to just pay out of pocket.

Her doctor charges about $169 for a regular visit, which beats marketplace costs. And although her inhaler is roughly $500 a month without insurance, a manufacturer’s coupon brings that down to $35 a month. Without that inhaler, her asthma is debilitating and threatens permanent damage to her lungs.

Willingham didn’t have health insurance for most of last year, either. She thought this year would be different, but she’s still on her own.

- Orion Rummler

Nancy Peske

Nancy Peske, 63, is a longtime book publishing freelancer in Wisconsin who has been enrolled in the Affordable Care Act since the law was enacted.

For years, the ACA has afforded her family some peace of mind. Before the health law, she and her late husband and son would bounce from health insurance company to health insurance company, “praying that we would never have to make a claim.”

In recent years, Peske has been able to use available enhanced subsidies to enroll in a Bronze plan with a monthly premium of $370. Now, she’s expected to pay $1,164.

As a breast cancer survivor, Peske feels it’s important to have coverage to stay healthy. She has made the difficult decision to stay enrolled. But there is a financial tradeoff: Peske intends to stop putting any money into retirement savings for the next two years until she can qualify for Medicare.

“I just think it’s crazy that in the last two years of my freelance work, I’m suddenly in this position — as if I’m a different person at age 63 than 65,” she said.

Peske says America’s health care system has put her in a tricky financial position before. Her ACA plan already included a high deductible, and she reduced retirement investments in 2023 and 2024 to help pay for some of $15,000 in out-of-pocket costs associated with cancer treatments. She also paid down hospital bills from her husband’s final weeks of life after a sudden lung cancer diagnosis.

All these delays to retirement savings have a disproportionate impact on people like Peske. Women live longer than men but generally have less money saved for retirement.

“What am I supposed to do? Am I supposed to shut down my business, go get a job somewhere — and then two years from now, start my business up again? That makes no sense,” she said.

—Barbara Rodriguez

Julie Morringello

Julie Morringello, 58, is a self-employed artist in rural Maine who pays $319 a month for her and her daughter’s insurance coverage under the ACA.

Morringello makes so little, the expiration of the enhanced tax credits is not expected to spike her monthly premiums — though her deductible is going up about $500 for the same coverage as last year.

Amid the emerging headlines about the changes to ACA coverage costs, Morringello was confused about what it all meant for her. She is a breast cancer survivor who relies on more frequent checkups to keep her healthy.

“I was flipping out,” she said. “I called the hospital where I receive my follow-up care and I said, ‘If I don’t have health insurance, will I be treated?’”

Morringello noted that even under her current ACA plan, health care is still very expensive. She reaches her deductible limit most years because of preventative care like MRIs. She hopes policymakers do something to bring down the overall cost of health care, given that it is impacting other aspects of her life.

“I cannot save for retirement. I can’t save for my daughter’s college education … it affects my life in a lot of ways,” she said.

—Barbara Rodriguez

Kate Violette

At 41, Kate Violette has health insurance, but it still won’t pay for most of their medical needs.

They enrolled in a low-premium Bronze plan this year after navigating the marketplace for the first time, since their COBRA eligibility ran out at the end of last year. The process was smoother than they expected, but after years of arguing with insurance companies to cover their care, they don’t expect much.

“I just feel like health insurers are constantly dealing in bad faith and it is a full-time job managing my own care,” said Violette, who is nonbinary.

Violette has Lyme disease, but it took awhile to get a diagnosis. Since the illness went untreated for so long, they developed joint issues that require frequent chiropractor visits. Leaving the Lyme unchecked also caused them to develop mast cell activation syndrome, which triggers severe allergic reactions. They end up in the emergency room three to four times a year.

Violette has a $7,000 deductible to pay before insurance kicks in, and that happens to be the exact cost of the medicine that keeps them alive. So, this month, they plan to drop $7,000 to pick up their prescription, then wait and see if their insurance will actually cover it in February. This is the first time they have had to pay for the medication on their own.

“This drug is like — if I go off of it, I will end up in the ER within two days,” they said.

They pay $560 a month for their marketplace plan and close to $200 a week to see their chiropractor. They see their Lyme specialist, a naturopath, about every six weeks for $360. Both their chiropractor and their naturopath recently stopped taking insurance through their provider, Providence Health & Services, a large healthcare system in Oregon. The other chiropractor specialist within driving distance from their home in Portland also doesn’t take their insurance.

Violette can bear these costs since they will need fewer medical appointments as treatment improves their symptoms. But spending $7,000 every month on their most essential medication just isn’t possible. So now they will wait and see if their insurance will work like it’s supposed to.

- Orion Rummler