It's been a long time since Suzanne has used heroin. But the 53-year-old Florida health worker remembers how it felt to be in the depths of an opioid addiction. She describes it like being stuck just underwater, unable to reach the surface for air.
“You'd do it and then the next thing you know, not to be sick you'd have to find more,” said Suzanne, who asked that only her first name be used because her employer doesn't know that she’s been in drug treatment for two decades.
Suzanne takes methadone, a prescription medication for opioid addiction that prevents withdrawal symptoms like vomiting, nausea and joint pain and reduces drug cravings without making her feel high. She also gets counseling for mental health challenges that fueled her heroin use. “I don't think I'd have a steady job or a life or even made it this far without the program.”
Suzanne is fortunate. Two years ago, a disruption in her insurance coverage could have threatened her recovery. But she was able to access low-cost methadone at a local clinic run by a nonprofit, Operation PAR.
Methadone and a similar drug, buprenorphine, are considered the gold standard of care for opioid use disorder. But few Americans who need the drugs, which substantially reduce the risk of a fatal overdose, actually receive them. The latest federal data show only about one in five in 2021.
The low numbers are in sharp contrast to a record-high overdose epidemic that killed nearly 108,000 Americans in 2022 and is driven primarily by opioids. The toll included about 8,000 Floridians.
People who need methadone or buprenorphine face a catalog of barriers to getting the medicines, including affordability, transportation, a shortage of providers, social stigma and stricter prescribing rules.
Medication treatment access is a problem across the country, but research suggests in states without Medicaid expansion, like Florida, the barriers can be higher for many low-income adults.
Florida has one of highest uninsured rates in the country, at 13.9% of people under age 65, 2022 data from the U.S. Census Bureau show.
Suzanne moved to Citrus County, Florida, from Massachusetts a couple years ago to be near her aging father. In Massachusetts, she qualified for Medicaid, which covered her methadone treatment. The state is among 40 that have adopted expansion since the Affordable Care Act authorized it in 2010. Suzanne thought she could get similar coverage in Florida, but didn’t qualify.
Instead, she found herself uninsured for more than a year, struggling to pay rent and find a full-time job. The initial out-of-pocket cost of her methadone and counseling was a little over $100 a week. She couldn’t afford it.
A lot of patients facing addiction are in similar positions, said Dawn Jackson, program director at a new methadone clinic in Inverness, a city of nearly 8,000 about 75 miles north of Tampa in Citrus County.
“It may not seem like a lot to some,” Jackson said. “But for others, it's life-changing to have to spend that kind of money to get well.”
The clinic is part of the Operation PAR network, which provides methadone and buprenorphine to nearly 4,000 patients along the Florida Gulf Coast, most of them uninsured or with Medicaid coverage. It uses a mix of state and federal grants — and, now, new settlement funds from a multistate lawsuit against opioid makers and distributors — to offer discounted care at its 10 addiction treatment centers.
It was able to get Suzanne’s treatment costs down to just $21 a week. She goes to the new location in Inverness, which opened last fall and is the only methadone clinic in Citrus County.
A hot spot of overdoses
Named for its once abundance of groves, Citrus County is an alluring place, with small towns and cities that offer glimpses into old, rural Florida. Like most places, it wasn’t spared in the country’s decades-long opioid crisis.
Inverness badly needed the new methadone clinic. Assessments showed the area had high rates of substance abuse and overdose and gaps in treatment access, especially for uninsured residents, Jackson said. Before the new clinic opened, many patients had to make trips — sometimes every day — to neighboring Hernando County to pick up their methadone prescriptions.
According to 2022 data from the Florida Department of Health, Citrus County has one of the higher county-level opioid overdose rates in the state. The county’s uninsured rate that year was nearly 16%.
Marisa Chaloux, a dosing nurse at the Inverness clinic, started working at Operation PAR about two years ago. She said she never realized the difference medications like methadone could make.
“You could hardly even get a conversation [going],” she said about people when they first enter treatment. “And now they’re getting jobs, they’re spending time with their kids. They’re getting their kids back and their life back. To me, that’s huge.”
Florida spends hundreds of millions in public funds to connect residents to medications for opioid addiction and is expecting about $3 billion over the next couple decades in opioid settlement money to help.
The support enables providers like Operation PAR to accept patients no matter their insurance status. But Jackson said Medicaid expansion would still matter.
For patients, she said the coverage could lessen the financial burden of addiction medications and give them access to a full range of medical care. For the clinic, more coverage could lessen the pressure on limited grant dollars.
“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 because we have to keep our doors open to help as many people as we can.”
Suzanne recently got private health insurance through her new job. But it doesn’t cover methadone treatment as well as Medicaid does. So Operation PAR is using its grant funding to keep her treatment costs down as long as they can.
Evidence of Medicaid’s Impact
Research shows when taken as prescribed, drugs like methadone and buprenorphine can not only prevent overdose deaths, but also curb illicit drug use and help people stay in recovery. In fact, a study published this year found that treating opioid addiction without medication might be more harmful than no treatment at all.
Some policy experts say one way to increase access to the life-saving treatments is Medicaid expansion, which covers adults with incomes up to 138% of the federal poverty level, or less than $21,000 a year for a household of one.
Brendan Saloner, a professor at Johns Hopkins Bloomberg School of Public Health, has been studying the impact of expansion on addiction treatment since the first states expanded Medicaid eligibility in 2014.
“The immediate effect was that a huge group of people with substance use disorder got insurance cards for the first time,” Saloner said.
Federal drug-use surveys found that uninsured rates plummeted nationwide by almost 10 percentage points among adults with substance use disorders post-ACA.
Coverage didn’t immediately translate into more care. For many months after expansion, there was no significant effect on substance use treatment, Saloner said. Trends stayed flat.
A couple years in, differences began to emerge. In a study published in 2018, Saloner and colleagues compared three states with Medicaid expansion — California, Maryland and Washington — against two without — Florida and Georgia.
They found Medicaid expansion was associated with a “significant” increase — roughly 13% — in people filling prescriptions for buprenorphine with naloxone.
Many other studies have also found positive effects related to expansion, including increases in buprenorphine prescribing, reductions in opioid-related hospital use and fewer opioid overdose deaths.
Saloner said federal expansion funds have become an important payment source for drug treatment. “One way to think about [expansion] is that it was a windfall for state governments,” he said.
Zachary Sartor, a family medicine doctor in Waco, Texas, said the research shows expansion would help his addiction patients, too. Texas is one of 10 non-expansion states and has the country’s highest uninsured rate, at 18.9%.
Sartor, who specializes in addiction treatment, said because expansion coverage improves access to primary care, patients could also receive treatment for health conditions that exacerbate or underlie their opioid use disorders.
Most of the patients at the health center where Sartor works are uninsured and paying out of pocket for buprenorphine therapy. The center can help with discounted, low-cost prescriptions, but he suspects many of his patients in treatment for opioid misuse would qualify for coverage under Medicaid expansion.
“Even $10 to $20 a month can be a lot,” Sartor said, especially because many patients have multiple health problems that involve treatment costs. “This isn’t just opioid use disorder that we’re treating. They may have high blood pressure medicine. They may have insulin. They may have medicines for anxiety or depression. Everything adds up.”
After Virginia expanded Medicaid in 2019, the number of enrollees receiving medications for opioid use disorder more than doubled in a year, according to a 2021 report from university researchers. Patients enrolled via expansion accounted for most of the increase.
Participation in Virginia Medicaid’s addiction and recovery treatment services also increased after expansion, by 79%.
Vicki Bierman, an addiction treatment provider in Blacksburg, Virginia, said Medicaid expansion has been a boon for her patients and for the clinic where she works.
Bierman is a psychiatric nurse practitioner at New River Valley Community Services, a public behavioral health provider serving four counties in the Appalachian region, which got hit hard in the opioid crisis. She prescribes buprenorphine and naltrexone, which is used to treat opioid and alcohol use disorders.
Under Medicaid expansion, Bierman said more of her patients are insured and more people — now newly covered — are seeking out treatment for drug use. The agency was also able to hire more health providers and expand buprenorphine access because of the new reimbursement dollars coming in.
Medicaid Unwinding Disrupts Care
Getting methadone was hard enough for Stephanie, 38, when she moved to Citrus County from Indiana last spring. The nearest clinic was a county away and she needed help with transportation. But at least she didn't have to worry about the cost of care.
As a parent with young children and unable to find a job, she qualified for Florida Medicaid despite the state’s tight eligibility restrictions. The insurance covers the methadone she needs to treat her opioid cravings and withdrawal sickness and pays for counseling.
So it was devastating when Stephanie arrived at the clinic last summer and learned she had been dropped from the state’s Medicaid rolls. Suddenly, she owed hundreds of dollars she couldn’t pay. She feared a disruption in care would trigger painful withdrawal symptoms.
“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?”
States began reviewing all Medicaid patients’ eligibility last year for the first time since the COVID-19 pandemic began. As of early April, more than 19.6 million Medicaid enrollees had been disenrolled nationally, including 1.4 million in Florida. Early data show more people are falling into coverage gaps in non-expansion states than in expansion ones.
At Operation PAR, where Stephanie gets treatment, Medicaid unwinding has led to a significant drop in coverage, said Jon Essenburg, vice president of medication-assisted and HIV services.
Since last April, when Florida began disenrollments, the percentage of opioid treatment patients at Operation PAR with Medicaid dropped from 44% to 28%.
Essenburg said if Florida had expanded Medicaid, many of those patients would still qualify for the program.
Even with the coverage, people who need opioid use medications would still face access issues. One reason, Essenburg said, is because of the state’s low Medicaid reimbursement rates, which can make it harder to find a provider who takes the insurance.
Essenburg said the current Medicaid reimbursement rate for medication treatment services is about $68 per person per week, which includes seven days of dosing.
Melanie Brown-Woofter, president and CEO of the Florida Behavioral Health Association, said the opioid settlement money on top of existing state funding should be enough to cover treatment for uninsured people. She said more focus should be on getting people into care and is skeptical the state needs Medicaid expansion to do that.
“We really feel like those who want to access services can receive them,” Brown-Woofter said.
Operation PAR had a waiting list for grant-funded assistance until last month, when it received a chunk of opioid settlement money that wiped it out — at least for the next few months.
Essenburg said the patchwork of grants for addiction treatment can make it difficult to plan for the long term or open new locations, which is why more consistent funding sources like Medicaid can help.
“It is way more expensive to deal with the inevitable repercussions of untreated opioid use disorder than it is to fund the treatment for it,” he said.
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.
It took six months for her Medicaid coverage to get reinstated. She's grateful she never had to go without her medicine.
“It’s [helped] me keep down a job, take care of my kids, just have a normal — really normal — life,” she said of the treatment. “All the things that some people take for granted. Just waking up every day and feeling good enough to do your whole day.”
The 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.
Kim Krisberg is a contributing writer for Public Health Watch who has covered public health policy and science for two decades.
Stephanie Colombini is a reporter for WUSF’s Health News Florida project.
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