As a parent with young children who was unable to find a job after moving, Stephanie qualified for Medicaid despite Florida’s tight eligibility rules. The state insurance program for people with low incomes or disabilities covers the methadone she needs to reduce her opioid cravings and prevent withdrawal sickness.

For nearly a decade, methadone has helped her hold down a job and take care of her kids. “Just have a normal, really normal, life,” said Stephanie, 39, who asked that her last name be withheld because her two youngest children don’t know about her history of opioid use disorder or that she has been in treatment for opioid addiction. “All the things that some people take for granted.”

So it was devastating for Stephanie when she visited her clinic in summer 2023 and learned she had been dropped from the state’s Medicaid rolls as the program worked to redetermine the eligibility of each enrollee. Suddenly, her methadone prescription cost much more than she could afford.

She panicked, afraid a disruption in care would trigger debilitating withdrawal symptoms like vomiting, fever, cramps, joint pain, and tremors. “That’s the first thing I thought,” she said. “I’m going to be so sick. How am I going to get up and take care of the kids?”

As of September, more than — including 1.9 million Floridians — had lost Medicaid coverage since the in March 2023 that had kept people continually enrolled. Among them were patients in treatment for opioid addiction, such as Stephanie, for whom a loss of coverage could be deadly.

that, when taken as prescribed, medications for opioid use disorder — such as methadone and a similar medicine, buprenorphine — can reduce dangerous drug use and by more than half. have of overdose and death increases when treatment is interrupted.

It is unclear how many people with opioid addiction have lost coverage in the Medicaid disenrollment, known as the “unwinding.” But researchers at Â鶹ŮÓÅ, a health information nonprofit that includes Â鶹ŮÓÅ Health News, estimate that more than 1 million low-income Americans depend on the federal-state Medicaid program for lifesaving addiction care.

At — a nonprofit addiction treatment provider from which Stephanie and thousands of others along Florida’s Gulf Coast get care — the percentage of opioid treatment patients with Medicaid has dropped from 44 to 28 since the unwinding began last year, the organization said.

Dawn Jackson, who directs Operation PAR’s newest clinic, about an hour north of Tampa in the small Citrus County city of Inverness, said it has been a struggle trying to stretch limited grant dollars to cover the recent surge of uninsured patients.

“There’s been sleepless nights,” Jackson said. “We’re saving lives — we’re not handing out Happy Meals here.”

Methadone and buprenorphine are considered the of care for opioid addiction. The drugs work by binding to the brain’s opioid receptors to block cravings and withdrawal symptoms without making a person feel high. Treatment reduces illicit drug use and the accompanying overdose risk.

However, few Americans who could benefit from the medicines actually receive them: The latest shows that in 2021 people who needed the medicines got them. The low numbers offer a sharp contrast to the record-high drug overdose epidemic, which in 2022 and is by opioids.

, a family medicine doctor in Waco, Texas, who specializes in addiction treatment, described the effect of such medications as “nothing short of remarkable.”

“The evidence in the medical literature shows us that things like employment and quality of life overall increase with access to these medications, and that definitely bears out with what we see in the clinic,” Sartor said. “That benefit just seems to grow over time as people stay on medications.”

Sartor, who works at a safety net clinic, prescribes buprenorphine, and most of his patients are uninsured or on Medicaid. Some are among the 2.5 million Texans who lost coverage during the state’s unwinding, he said, causing their out-of-pocket buprenorphine costs to abruptly rise as much as fourfold.

The loss of coverage — which also cuts access to health care beyond addiction treatment — often requires patients to make risky trade-offs.

Sartor said that can mean patients having to choose between medications to treat their addiction and drugs for other medical conditions. “You start to see the cycle of patients having to ration their care,” he said.

Many people who lost their insurance in the Medicaid unwinding have since seen it reinstated. But even a brief disruption in care is serious for someone with opioid use disorder, said , a journalist and an author who writes about addiction.

“If you want to save people’s lives and you have a lifesaving medication available, you don’t interrupt their access to health care,” Szalavitz said. “They end up in withdrawal and they end up dying.”

When Stephanie lost her Medicaid coverage last year, Operation PAR was able to subsidize her out-of-pocket methadone costs, so she paid only $30 a week. That was inexpensive enough for her to stick with treatment for the six months it took to restore her Medicaid coverage.

But the patchwork of federal and state grants that Operation PAR uses to cover uninsured patients doesn’t always meet demand, and waiting lists for subsidized methadone treatment are not uncommon, said Jackson, who directs the clinic in Citrus County.

Even before the Medicaid unwinding, of people younger than 65 in Florida were uninsured, one of the highest rates in the country, according to census data. Florida is also states that have not expanded Medicaid for low-income adults.

Jon Essenburg, chief business officer at Operation PAR, said a recent wiped out the group’s waiting lists, at least for now. But he said settlement dollars — Florida $3.2 billion over 18 years from opioid manufacturers and distributors — are not a long-term solution to persistent coverage gaps, which is why stabler reimbursement sources like Medicaid can help.

“Turning people away over money is the last thing we want to do,” Jackson said. “But we also know that we can’t treat everybody for free.”

Stephanie is grateful she never had to go without her medicine.

“I don’t even want to think about what it would have been like if they wouldn’t have worked with me and helped me with the funding,” Stephanie said. “It would have been a very dark rabbit hole, I’m afraid.”

Kim Krisberg is a contributing writer for and co-leads the reporting project . Stephanie Colombini is a reporter for WUSF’s project.

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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Josie had put off packing long enough. The high school sophomore in St. Augustine, Florida, sat on her bed while her mom, Sarah, pulled clothes from her closet.

It held a trove of good memories — like the red dress Josie wore to the winter homecoming dance and a pink cover-up she sported at a friend’s pool party. Good times like these have felt scarce lately. Josie, who’s transgender, no longer feels welcome in Florida.

Her family requested they be identified by their first names only, fearing retaliation in a state where Republican Gov. Ron DeSantis and other officials have proposed, politicized, and passed policies in health care and education that limit identity expression, access to certain school activities, and accommodations for trans people.

The ACLU is it calls an “attack on LGBTQ rights, especially transgender youth.” State legislation has forced some residents like Josie to rethink where they want to call home.

Josie moved more than a thousand miles from St. Augustine — and her parents — to start a new life in Rhode Island and stay with her aunt and uncle, who live outside Providence.

Preparing her for the move, Josie’s mom held up outfits and asked, “Staying or going?”

The formal dress could stay behind. Cardigans and overalls went in the suitcase. At one point, the family dog, Reesie, crawled past the luggage to snuggle up to Josie.

“She has a sense when I’m sad, and just comes running in,” said Josie, 16.

Moving to Rhode Island had been Plan B for some time, but Josie said she never thought it would happen. Much has changed in the past year.

Florida is one of more than a that have passed bans on gender-affirming medical treatments for minors, such as puberty blockers, hormone therapy, and certain surgeries.

Florida’s medical boards began debating those bans last summer. For months, Josie she would lose access to hormones she takes to help her body align with her identity.

Board members argued gender-affirming treatments were “experimental” and, in March, barred doctors from prescribing them to minors. They allowed children who had already started care to continue. But Josie didn’t trust that her access would last.

This spring, the legislature all trans youth to stop treatment by Dec. 31, part of a bill to bolster restrictions on transgender care.

“I thought that they would realize what they’ve done wrong and repeal some things,” Josie said. “But they just kept going. It just became, like, too real, too fast.”

Lawmakers stripping that provision just before the session ended this month, allowing young people like Josie to stay in treatment.

But she had already made her decision to move out of state. School has been challenging at times since Josie came out as trans in eighth grade. Some childhood friends rejected her.

Josie wanted to play on the girls tennis team, but bans trans girls and women from competing on school teams meant for athletes assigned female at birth.

She said living in Florida was also especially painful after the state passed the , which “prohibits classroom discussion about sexual orientation or gender identity in certain grade levels.” Critics call it the “Don’t Say Gay” law and said it has had a on some teachers. Josie noticed stickers signifying that areas were “safe spaces” for LGBTQ+ people had been taken down at school.

“Which is just ridiculous, like you want your students to be comfortable and safe,” she said.

The new laws and anti-trans rhetoric are hurting kids across Florida, said Jennifer Evans, a clinical psychologist at the University of Florida’s in Gainesville.

“I’m seeing more anxiety, more depression,” Evans said. “Things I hear patients say are, ‘The government doesn’t want me to exist.’ They don’t feel safe.”

States are pushing measures on of gender-related issues — not just health care, but what schools can teach or which bathrooms people can use.

Bills don’t have to pass to cause harm, said Evans, who is queer.

“It’s a lot to feel like enough people in this country don’t agree with your existence — which actually isn’t affecting them — that people want to shut down other people’s access to living complete and affirmed lives,” she said. “It’s painful to see that.”

Four families who sought care at Evans’ clinic have already left Florida, she said, while another 10 plan to move this year. Some older teens she treats also want to get out when they turn 18.

But moving isn’t easy for many families.

“Just financially, it’s difficult to uproot what we’ve set up,” Josie’s dad, Eric, said.

They’ve owned their home in St. Augustine for a long time. Eric recently started a new job. Josie’s mom, Sarah, works at a private college that offers a benefit that allows Josie and her older sister to get reduced tuition at some colleges around the country.

So her parents decided that, at least for now, Josie would go live with her aunt and uncle and they would stay behind.

The choice was devastating.

“It was just terror in my heart, like you could just feel that cold burst in my chest just going all throughout my body,” said Sarah. “Josie is part of everything I do.”

Josie will finish her sophomore year in Rhode Island before returning to St. Augustine for summer break. Her family sees it as a trial run for what could be years of separation.

One night before Josie left, she invited friends over for a going-away party. The teens played a dance video game, laughing as they performed a hip-hop routine.

Sarah brought out a Black Forest cake. “We love you Josie” was piped in frosting along the platter, framed by two hearts.

It was a simple but powerful send-off from the support system Josie has relied on in Florida. A few days later, she and her mom flew north to get Josie settled. Leaving her daughter in Rhode Island was “agony,” Sarah said.

“I was a mess,” she said. “I cried the whole way to the airport. I just felt I was going the wrong way.”

Sarah is still adjusting to life without Josie at home, but they talk every day. And Josie is getting used to her new environment. Her aunt and uncle have been great, she said, and she’s making friends at school.

Her new school is a little smaller than her old one and in a community that feels more liberal-minded, the family said. Josie said she loves seeing pride flags in the halls and plans to join the Gender and Sexuality Alliance Club. It all feels like a “bombardment of support.”

“It was just, like, such a shock to me — like, not a bad shock, but, like, just shocked that this is how schools can be,” Josie said. “It’s just that Florida’s choosing not to be like that.”

DeSantis’ office did not respond to several requests for comment to address concerns of families like Josie’s.

Since Josie moved to Rhode Island in April, DeSantis has signed that would curb health care and gender expression of trans people.

Josie’s parents said they’ll keep their pride flag waving in the front yard and advocate for equality while she’s away.

Josie said she thinks about the trans kids who can’t leave and urged them not to give up hope. But right now, she needs to move on.

This article is from a partnership that includes WUSF, , and Â鶹ŮÓÅ Health News.

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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“It’s a blessing because some people, like me, are not fortunate, and so this is what I needed,” she said.

Green wanted the exam because cancer runs in her family. And she shared another health worry: Her large breasts cause her severe back pain. A doctor once recommended she get reduction surgery, but she’s uninsured and said she can’t afford the procedure.

In a 2022 , 38% of American adults surveyed said they had put off medical treatment within the previous year due to cost, up from 26% in 2021. The new figure is the highest since Gallup started tracking the issue in 2001. In a survey by Â鶹ŮÓÅ released last summer, 43% of respondents said they or a family member delayed or put off health care because of costs. It found people were most likely to delay dental care, followed by vision services and doctor’s office visits. Many didn’t take medications as prescribed.

The Newtown screening event — organized by the nonprofit in partnership with a local hospital and other health care providers — is part of an effort to fill the coverage gap for low-income people.

Green explained that her teeth are in bad shape but dental care will also have to wait. She lacks health insurance and a stable job. When she can, she finds occasional work as a day laborer through a local temp office.

“I only make like $60 or $70-something a day. You know that ain’t making no money,” said Green. “And some days you go in and they don’t have work.”

If she lived in another state, Green might be able to enroll in Medicaid. But Florida is one of that haven’t expanded the federal-state health insurance program to cover more working-age adults. With rent and other bills to pay, Green said, her health is taking a back seat.

“I don’t have money to go to the dentist, nothing,” she said. “It’s so expensive. Now, to get one extraction, one tooth pulled, it’s like $200-$300 that you don’t have. So I don’t know what to do. It’s like fighting a losing battle right now.”

In the Â鶹ŮÓÅ poll, 85% of uninsured adults under age 65 said they found it difficult to pay for health care. Nearly half of their insured counterparts said they struggled with affordability as well.

The U.S. inflation rate hit a four-decade peak last year, and parts of Florida, including the Tampa metro area, .

“We see an increasing desperation,” said , executive director of the Multicultural Health Institute.

The nonprofit, which helps people access low-cost care, is based in Newtown, where, inland from Sarasota’s lavish beach communities, many residents live below the poverty line, lack insurance, and face other barriers to consistent and affordable care.

“It’s very difficult for people to be concerned about abstract things like getting screenings, getting regular health maintenance, when they’re contending with the challenges of basic survival: food, shelter, transportation often,” Merritt said.

Merritt and her team of volunteers work to build trust with residents who may not be aware that support is available. They help people apply for low-cost insurance coverage, free medication programs, and other resources that can reduce treatment costs. Volunteer Bonnie Hardy said the people she serves have many financial worries, but one thing tops the list.

“Right now? A place to stay,” said Hardy. “Housing is horrible.”

High housing costs have started to ease in recent months, but rent in Sarasota has risen nearly 47% since the pandemic began in 2020. Hardy helps people find housing and connects them with programs that cover costs like utilities and security deposits. The goal is to stabilize their lives, and she said that can improve health.

“Because they’re more comfortable now,” she said. “They feel like, hey, the rent is paid, I can let my guard down, maybe I can go get the medical attention I need.”

Research shows can lead to bigger problems. The Gallup Poll found 27% of respondents delayed treatment due to costs even for “very or somewhat serious” conditions.

Some people may be holding off on treating medical issues because of health care debt. An investigation from NPR and KHN found about 100 million people in America had medical debt. About 1 in 8 of them owe more than $10,000, according to a Â鶹ŮÓÅ poll.

Treating cancer or chronic conditions like diabetes early can save lives and be than treating advanced-stage illnesses, according to the Centers for Disease Control and Prevention.

Doctors at the health screening event in Newtown said it’s critical to help residents obtain preventive care. At the health fair, substitute teacher Crystal Clyburn, 51, got a mammogram on the mammography bus and had her blood pressure checked.

Clyburn doesn’t have health insurance and said she relies on free events to stay on top of her health.

“I just try to take advantage of whatever that’s out there, whatever that’s free,” she said. “You have to take care of yourself because you can look healthy and not even know you’re sick.”

After the cuff came off, a doctor told Clyburn her blood pressure was a little high but not high enough that she needed to take medication. Clyburn smiled, thanked him, and left relieved to know that the cost of prescription drugs was one expense she wouldn’t have to worry about.

This article is from a partnership that includes , , and .

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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They tried video chats and visits from outside her bedroom window, but White said that just upset her mom, who is 87. White’s mother couldn’t grasp why she could hear familiar voices but not be with her loved ones in person.

When the family was allowed in, disruptions continued. White said the facility shut down whenever a resident or staff member had the virus.

All the while, her mom’s memory was deteriorating.

Restrictions on visitation eventually relaxed, White said, but she questions whether protecting her mom from covid-19 was worth the lengthy separation. “What anxiety, loneliness, and confusion she must have had — I think I would have rather her seen her family,” she said.

Florida Gov. Ron DeSantis April 6 that will make it easier for people like White to see their loved ones in health care facilities. Before Florida, at least eight states had passed similar laws, and several others have bills under consideration.

Some laws, like those passed last year in New York, Texas, and Washington state, are specific to long-term care facilities. They allow residents to designate essential caregivers, also known as compassionate caregivers, who are allowed to visit regardless of whether there is a health crisis. Texans also added protections in their constitution.

Other states — including Arkansas, North Carolina, and Oklahoma — passed similar “No Patient Left Alone” laws that guarantee visitor access to patients in hospitals.

Hospitals and long-term care facilities set pandemic restrictions on visitors to protect patients and staffers from infection. But supporters of these new laws said they want to ease the restrictions because the rules may have harmed patients.

An Associated Press investigation found that for every two residents in long-term care who died from covid-19, another resident died prematurely of other causes. , attributed some of those deaths to neglect. Other deaths, listed on death certificates as “failure to thrive,” were tied to despair.

Even in regions of the U.S. with low rates of covid, the risk of death for nursing home residents with dementia was 14% higher in 2020 than in 2019, according to a study published in February in .

The researchers pointed to factors besides covid infection that may have contributed to the increased mortality, such as reduced access to in-person medical care and community support services and “the negative effects of social isolation and loneliness.”

Woman Took a Job at Facility to Be Near Her Husband

When long-term care facilities and hospitals began closing their doors to family visitors, patient advocate Mary Daniel of Jacksonville, Florida, was worried about what might happen to her husband, Steve, who has Alzheimer’s disease. “I promised him when he was diagnosed that I would be by his side every step of the way, and for 114 days I was not able to do that,” Daniel said.

To get back inside, Daniel took at her husband’s assisted living facility so she could see him. Daniel worked in the kitchen two nights a week and went to his room after her shift. She helped him change into his pajamas and lay beside him watching TV until he fell asleep. “That is really why I’m there, to be his wife, to hold his hand, so he feels that love,” Daniel said.

Daniel has been fighting for visitor rights at the state and federal levels ever since. She’s a leader of , a coalition with thousands of members. She also served on a state task force that informed Florida’s decision to order long-term care facilities to reopen to families in fall 2020.

“We understand that covid kills, but we want to be sure everyone understands isolation kills, too,” Daniel said.

The visitation laws also include provisions to protect patients and staffers by directing facilities to establish infection-control measures that families must follow to enter. That could mean mask requirements or health screenings. In Florida, protocols for visitors cannot be more stringent than they are for staff members, and vaccination status can’t be a factor.

Also in Florida, facilities can ban visitors who don’t follow the rules. That’s fine with advocates like Daniel. “I mean we’re not here beating down the door saying, ‘You can never kick us out, and I’m going to be here as long as I want to,'” she said. “We want to be sure that everything is safe.”

DeSantis, who appointed Daniel to the 2020 task force, was a vocal supporter of expanding visitor access. “Covid cannot be used as an excuse to deny patients basic rights, and one of the rights of being a patient, I think, is having your loved ones present,” DeSantis said at a news conference in February.

Balancing the Joy of Visits With the Risks of Infection

In November, the Centers for Medicare & Medicaid Services to open their doors to visitors even amid covid-19 outbreaks, so long as they screen visitors to determine whether they have tested positive or have symptoms of covid-19.

Hospitals and assisted living facilities are not regulated in the same way as nursing homes. Some health care industry leaders fear the new laws for hospitals and assisted living facilities won’t provide operators the flexibility they need to respond to crises.

Veronica Catoe, CEO of the Florida Assisted Living Association, represents facilities with varying capabilities to accommodate visitation. Some are large with private rooms and multiple common areas; others are single-family homes that just have a handful of residents.

“These operators are trying to protect not only the loved one that wants a visit, but also the loved one that doesn’t want these outsiders coming in. They both have resident rights,” Catoe said.

Florida’s law outlines various scenarios during which visitation must be allowed at all times. Those include if a patient is dying, struggling to transition to the new environment, or experiencing emotional distress, among other factors.

Catoe said those situations aren’t always easy to define. “Is it the facility that makes that decision, is it the family that makes that decision, or is it the resident?” she asked. “And when they’re in conflict, who gets the deciding factor?”

Relatives Wanted More Time With a Dying Loved One

Mary Mayhew, president of the Florida Hospital Association, said the decision is also difficult for medical centers. “They are extremely reluctant to place restrictions on [visitor] access, and it has largely been done during this extremely unusual time period when we have had a virus — continue to have a virus — that we are often learning something new about every day,” Mayhew said. She added that people go to hospitals because they’re already sick or injured, which makes them vulnerable to infection.

She said families are vital to patient care and stressed that even during covid surges and lockdown, hospitals have tried to get relatives in to visit, especially when patients were dying.

Kevin Rzeszut said his family needed more.

In August, when Tampa hospitals were overwhelmed with patients sick with the delta variant, Rzeszut’s father died from a bacterial infection at age 75. “By the time we saw him, I mean, he was gone,” Rzeszut said. “There was no consciousness left; he was on so many medications.”

He couldn’t visit his dad for nearly two weeks, he said.

He said the staff did the best they could. “The nurses and doctors, they can look at notes all day long, but they don’t know him,” Rzeszut said. Rzeszut’s mother spent 53 years with his father, Rzeszut said, and “she’d be more attuned to minor improvements or degradations. Maybe that’s a pipe dream, but it feels real.”

Rzeszut said he supports measures to give families more access to their loved ones, so long as enforcing them doesn’t add more workload to an “already overburdened” health care system. What he really wishes, he said, is that more people would take covid seriously so people didn’t need a law to visit their loved ones.

This story is part of a partnership that includes , , and KHN.

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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