Sara Habein, a mother of two living in northern Montana, recently learned that she has cysts in her brain.
Every six months, her doctors want to check that the cysts aren’t growing. She may need surgery if they get larger and put too much pressure on her brain. If she didn’t have Medicaid, she would either be racking up costs on a payment plan or would have to make a difficult decision about the various other medications and treatments she needs for chronic health issues — all of which she relies on Medicaid to cover.
Because of her conditions, Habein works very little. But changes to Medicaid requirements recently passed under President Donald Trump’s “one big, beautiful” tax and spending law that will go into effect in late 2026 and early 2027 may start requiring her to work if she wants to keep her health insurance. She’s one of millions of Americans, particularly women, who face the very real possibility of being booted off the health insurance that serves low-income people and 30 million children.
“I’m not feeling optimistic,” Habein said. “I have a fair number of prescriptions that I would hate to have to figure out how to pay for.”
Queer women like Habein are especially vulnerable. Of the 1.8 million LGBTQ+ people relying on Medicaid as their primary insurance, more than 1.2 million of them are cisgender lesbian and bisexual women, per the Williams Institute at UCLA School of Law. Lesbian and bisexual women experience higher rates of poverty than cisgender gay and bisexual men, and they are often primary caregivers. Those two factors have made Medicaid a crucial lifeline.
Even those who are working may be impacted by the changes to Medicaid, experts said, due to new, more extensive paperwork requirements that in practice may lead to eligible families getting booted off their insurance.
“It’s just really hard to overstate the harm that these cuts will convey, particularly to LGBT folks and LGBT families,” said Caleb Smith, the LGBTQI+ policy director at the Center for American Progress (CAP), a liberal think tank.
Women in general already face a pay gap when compared with men. But bisexual women face some of the harshest pay disparities of any LGBTQ+ group due to a combination of discrimination and stigma, earning about 68 cents for every $1 White, non-Latino men earned, according to a 2021 study by the Human Rights Campaign.
Lesbian women by comparison tend to have a narrower pay gap than women overall, particularly if they don’t have children. But among lesbian couples, unlike heterosexual couples, the pay gaps that do exist are compounded by what is sometimes referred to as the double pay gap.
That leads to lower household earnings overall. According to a nationally-representative survey by CAP, households headed by LGBTQ+ women earn $42,500 on average while non-LGBTQ+ households earn about twice as much — $82,250 on average. Nearly a third of households led by LGBTQ+ women earn less than $30,000 a year. These pay disparities lead more lesbian and bisexual women to live in poverty and turn to Medicaid.
Lesbian and bisexual women are also more likely than other LGBTQ+ adults to have children under the age of 18 in their households, and therefore may turn to Medicaid to ensure children are covered, or because they are not working to provide caregiving support.
According to CAP’s research, LGBTQ+ adults are far more likely to take time off work to care for friends and family. LGBTQ+ adults were also 50 percent more likely to take time off to care for an elderly parent and four times more likely to be missing work to care for an extended family member, a friend or a neighbor.
The implications of narrowing Medicaid eligibility reverberate across entire families, Smith said. Not only are some LGBTQ+ adults turning to Medicaid to provide health care if they’re not working, but losing that coverage could impact the family members who rely on them, too.
“It’s particularly cruel for them to be choosing that health care because they are trying to take care of family, and then to have that taken away, too,” Smith said.
Disabled LGBTQ+ adults are particularly vulnerable to Medicaid cuts. One million LGBTQ+ adults living with a disability rely on Medicaid, according to the Williams Institute. And the poverty rate for adults with disabilities is more than twice the rate of adults with no disability.
“For lesbian and bisexual women, they’re more likely to be raising kids — in particular, bisexual women have the highest rates of child rearing in the community — but they also have higher rates of disability,” said Brad Sears, distinguished scholar of law and policy at the Williams Institute.
As a whole, LGBTQ+ people are also managing chronic conditions and living with disabilities that impact daily life at higher rates than non-LGBTQ+ people. The work that goes into managing a chronic illness is essentially a part-time job, Habein said. She has to educate doctors about her brain fog and chronic fatigue. She tries different medications to manage her migraines — her latest treatment includes Botox. She takes supplements for her thyroid issues. And, as a parent, she has to be mindful of conserving her energy. Due to her conditions, her battery is never fully charged, no matter how much sleep or rest she gets.
Habein can’t work 80 hours a month. When she tried to work as a barista back in 2011, standing on her feet for long hours, she experienced fibromyalgia — significant chronic pain — for the first time, and it’s stayed with her since.
She now works part time from home for a marketing and social media consulting company, but she can go months without a paycheck if no clients are coming in.
The new law narrows the exemptions parents and caretakers can qualify for; only parents with children under the age of 14 qualify. Habien’s kids are 17 and 21. But, she would be exempt from new Medicaid work requirements if she can prove to the government that she has a disability. Habein has never applied for disability benefits before, so it would be new territory for her.
“I am not confident that the paperwork will go very smoothly,” she said.
In her 10 years of being a Medicaid recipient, and briefly using Supplemental Nutrition Assistance Program (SNAP) benefits to buy food for her family, she has jumped through plenty of bureaucratic hoops. She’s had paperwork for SNAP benefits come in the mail after the due date to apply had already passed. And it’s hard enough to get someone on the phone to answer questions, or to make an in-person appointment to sort these issues out, without adding government cuts to the picture.
“I guess my question is, with all this extra paperwork, but they’re laying everyone off in every category of government, who’s going to be processing this paperwork?”
Under the new law, patients will have to complete paperwork every six months to prove they are working or volunteering at least 80 hours a month to get Medicaid coverage. Even if some caregivers or people with disabilities qualify for an exemption, the work of having to prove their eligibility every six months through new paperwork could deter people from accessing coverage, experts told The 19th.
Clinics that serve a large population of Medicaid recipients are preparing to have to step in to help patients navigate the new requirements. At the Community Health Center of Franklin County in Western Massachusetts, an area known for its high concentration of lesbian women, CEO Allison van der Velden said the clinic will likely have to add staff just to help patients stay insured.
“It’s already really burdensome to do it once a year. So doing it every six months, people are going to constantly get booted off insurance they’re eligible for, and we’re going to have to work and spend money that should be spent on health care,” she said.
The clinic is a nonprofit federally qualified health center that serves all people, regardless of insurance status, ability to pay or identity. About 40 percent of the clinic’s patients are on Medicaid; even a small cut to that share could lead to staff cuts and reduction of services, van der Velden said. In the rural area she serves, that will further limit options for patients, including the LGBTQ+ population they serve.
For lesbian and bisexual women in particular, it may be years before the impact of the cuts to Medicaid is fully known. Already, data on LGBTQ+ people is severely limited — and it’s being cut further.
It’s not a delay that many can afford to have, Smith said: “When what we are assessing is loss of health care, that delay is really significant.”
Without health insurance, Habein isn’t sure how much she would owe for all of her treatments. Every three months, the Botox shots for her migraines would likely cost anywhere from $300 to $600. MRI scans can easily reach over $1,000, depending on the hospital. And her generic Cymbalta prescription to treat her chronic pain and depression would cost $400 out of pocket.
The costs add up fast.
While navigating these challenges, she’s gotten used to what she calls the “casual cruelty” of people who think she’s trying to scam them, or scam the system, by trying to get health insurance. It’s disheartening, Habein said.
“It’s made me see what a challenge it is to try and get people to care,” she said.
Great Job Chabeli Carrazana & the Team @ The 19th Source link for sharing this story.
