It was hard enough for Stephanie to get methadone treatment when she moved from Indiana to Florida last year. The nearest clinic, north of Tampa, was almost an hour away, and she needed help with transportation.
But at least Stephanie didn't have to worry about affording it. Medicaid in Florida covers methadone, which reduces her opioid cravings and prevents withdrawal symptoms.
Stephanie had young children, and had trouble landing a job after the move. So even though Florida has strict eligibility rules for Medicaid, she qualified for coverage.
For nearly a decade, methadone has helped Stephanie juggle jobs and take care of her kids. Stephanie, 39, asked to be identified by her first name only, because her two youngest kids don't know she's in treatment for opioid addiction.
But methadone lets her “just have a normal — really normal — life,” she said. “You know, all the things that some people take for granted.”
So it was devastating when Stephanie arrived last summer at her clinic in Inverness, Florida to pick up her weekly supply of doses, and learned she had been dropped from the state’s Medicaid rolls.
Florida, like other states, was going through its data and checking the eligibility of each enrollee — part of a bureaucratic reset after the end of the pandemic.
Stephanie didn’t know why she was disqualified, but suddenly, her methadone prescription cost hundreds of dollars that she couldn’t afford.
She panicked, afraid that 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 Sept. 12, more than 25 million Americans – including 1.9 million Floridians – had lost Medicaid coverage since the expiration of federal pandemic protections, which kept people continually enrolled until March 2023.
They include patients in treatment for opioid addiction, such as Stephanie, for whom a loss of coverage can bring fatal risk.
Research shows that when taken as prescribed, medications for opioid use disorder — such as methadone and a similar medicine, buprenorphine — can reduce dangerous drug use and cut overdose fatalities by more than half.
Other studies find the risk of overdose and death increases when such treatment is interrupted.
It is unclear how many people with opioid addiction have lost coverage in the massive Medicaid disenrollment, known as the “unwinding.”
But researchers at nonprofit think tank KFF estimate that more than 1 million low-income Americans depend on the federal-state program for life-saving addiction care.
At Operation PAR — an addiction treatment nonprofit where Stephanie and thousands of others along Florida’s Gulf Coast get care — the percentage of opioid treatment patients with Medicaid dropped from 44% to 26% since the unwinding began last year, the organization said in June.
Operation PAR struggled trying to stretch the nonprofit’s limited grant dollars to cover the recent surge of uninsured patients, said Dawn Jackson, who directs Operation PAR’s newest clinic in Inverness, a small city about an hour north of Tampa.
“There’s been sleepless nights,” Jackson said. “We’re saving lives — we’re not handing out Happy Meals here.”
During an overdose epidemic, medications can save lives
Methadone and buprenorphine are considered the gold standard of care for opioid addiction.
The medications work by binding to the brain’s opioid receptors to block cravings and withdrawal symptoms without causing a high in a person with an opioid use disorder. The effect reduces illicit drug use and the accompanying risk of overdose.
However, few Americans who need these medicines actually receive them — the latest federal data show only about one in five in 2021.
Those low numbers stand in sharp contrast to the record-high number of overdose deaths — nearly 108,000 Americans in 2022. That number is driven primarily by opioids.
Given the scale of the overdose epidemic, the impact of these medications is “nothing short of remarkable,” said Zachary Sartor, a family medicine doctor in Waco, Texas, who specializes in addiction treatment.
“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 local safety-net clinic, prescribes buprenorphine. Most of his patients are either uninsured or have Medicaid coverage.
Some of his patients are among the 2.5 million Texans who’ve lost coverage during the state’s unwinding, he said, causing their out-of-pocket buprenorphine costs to abruptly rise — in some cases as much as fourfold.
Disruptions in care can be life-threatening for those in recovery
The loss of coverage also affects access to other types of health care, potentially forcing patients to make risky trade-offs.
“It comes down to making a choice of accessing medications for [opioid addiction] versus accessing other medications for other medical conditions,” Sartor said. “You start to see the cycle of patients having to ration their care.”
Many patients who initially lost insurance in the Medicaid unwinding have since had it reinstated. But even a brief disruption in care is serious for someone with an opioid use disorder, according to Maia Szalavitz, a journalist and author who writes about addiction.
“If you want to save people's lives and you have a life-saving 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 only paid $30 a week. That was low enough for her to stick with her treatment for the six months it took to contact the state and restore her Medicaid coverage.
But the patchwork of federal and state grants that Operation PAR uses to cover uninsured patients like Stephanie doesn’t always meet demand, and waiting lists for subsidized methadone treatment are not uncommon, Jackson said.
Even before the Medicaid unwinding, Florida had one of the highest uninsured rates in the country. Currently, 15.5% of working-age adults in Florida are uninsured. Florida is also one of 10 states that has not expanded Medicaid to allow more low-income adults to qualify.
A temporary solution came earlier this year with an infusion of opioid settlement money, which allowed Operation PAR to clear its waiting lists, according to Jon Essenburg, chief business officer.
Although Florida expects to receive $3.2 billion in settlement funds over 18 years from opioid manufacturers and distributors, that’s not a long-term solution to persistent coverage gaps, Essenburg said, because all that money will be divided among numerous organizations and recipients.
That’s why more stable reimbursement sources like Medicaid can help, he added.
If more patients were covered by health insurance, it would help ease the burden on the clinic’s limited pool of assistance dollars. But it would also help people who are already struggling with financial stress.
"Turning people away over money is the last thing we want to do,” said Dawn Jackson, director of the Inverness clinic. “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 Public Health Watch and Stephanie Colombini is a health reporter for WUSF. This story is part of “The Holdouts,” a collaborative project led by Public Health Watch that focuses on the 10 states that have not expanded Medicaid, which the Affordable Care Act authorized in 2010.
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