Megan King had long used drugs casually. But when her brother died of a drug overdose in 2010, her use of opioid painkillers, heroin, and benzodiazepines “just kind of spiraled out of control,” she said.
King, who is now 34 and lives in Oceanside, California, managed to keep her job in the video game industry through her addiction, but she felt like she was on the brink of collapsing under the weight of her drug use. At the peak, she could blow through $300 worth of opioid painkillers, heroin, or benzos in a day or two — leaving her finances, she said, in “a wreck.”
But after six years of accelerated drug use, King managed to find a treatment that worked for her: methadone. She went to a methadone clinic, daily at first, to obtain a medication that helped stave off opioid cravings and withdrawal. She’s remained off opioid painkillers and heroin since 2016.
Some people use methadone for addiction treatment indefinitely to avoid relapse, and King said staying on methadone would make it easier for her to remain off drugs. But she’s now planning to abandon the regimen for one reason: “100 percent, it’s the costs.”
King lives paycheck to paycheck as a quality assurance analyst for a game developer and has just $40 in savings. Throughout 2019, she paid $300 a month for methadone treatment at SOAP MAT, a program near her home and job — a cost that she had to bear on her own because health insurance wouldn’t pay for that clinic. (This cost is typical for methadone clinics, where out-of-pocket expenses range around $300 to $500 a month.)
The cost is close to unmanageable. “I’m constantly like, ‘Okay, well, I can pay my gas and electric bill a little bit late. Then I can pay the clinic, and I’ll catch up with them later. Then I’ll take some of my meager savings and I’ll put it toward this. Then maybe if I ask my mom for $20, she’ll give it to me,’” she said.
“It just always feels like I’m playing catch-up to get there,” King added. “I’m on a hamster wheel of trying to figure out how to pay this price. It just never ends.”
King is concerned about what will happen if she abandons methadone, explaining that the threat of relapse is “always going to be a worry.” But her situation, she said, is financially unsustainable.
As one of the three federally approved medications for opioid addiction, and a drug that’s existed for decades, methadone is among the most studied and supported forms of addiction treatment. The medication, an opioid itself, stops withdrawal and cravings from opioids but doesn’t produce the same kind of high that conventional painkillers or heroin do when it’s taken as prescribed.
Studies show methadone and other medications reduce the mortality rate among opioid addiction patients by half or more, and keep people in treatment better than non-medication approaches. But the high out-of-pocket cost keeps methadone out of reach for some potential patients.
More than 1,200 people, including King, have submitted responses to Vox’s addiction treatment survey, part of our Rehab Racket project investigating the costs and quality of addiction care in the US. Many methadone patients shared a similar story: They like their treatment and clinics, but the cost is too much — typically because insurance won’t pay for the care they feel they need to survive, or the methadone clinic doesn’t take insurance.
King originally started at SOAP MAT (Stop Opiate Addiction Program Medication-Assisted Treatment) while she was on Medi-Cal, California’s equivalent of Medicaid. When she got a raise in 2018, she moved to a private insurance plan with Kaiser Permanente.
But Kaiser wouldn’t pay for SOAP MAT, the clinic that King had grown accustomed to and liked, which is less than 10 minutes away from her. Instead, Kaiser only covered a clinic that was 30 minutes away — a trip that, at first, King had to make daily. Kaiser also required frequent check-ups at yet another clinic that was an hour away, with $20 copays. The combination of new copays and travel costs made her wonder if she was saving any money at all.
So King went back to SOAP MAT, paying out of pocket, with a plan to wean herself off methadone over time. At the start of this year, she also changed insurers. She hopes her new plan will cover SOAP MAT, but the whole experience has shaken her so much that she thinks staying on methadone would be financially unwise.
“I don’t want to get to a point where I can’t pay for it and then I’m dropped suddenly,” she said. “I’d like to taper on my own before anything like that happens.”
Tony, a 40-year-old in Colorado Springs, Colorado, said methadone has been crucial to his recovery from painkillers and heroin addiction since 2012. But it’s expensive: It costs around $350 a month for him plus another $350 a month for his wife, who’s also on methadone for addiction treatment. Tony told me he tried to get off methadone in 2016 due to the costs, but got back on it after a couple years because he relapsed on painkillers — as he put it, he “ended up getting caught putting my hand back in the cookie jar.”
Tony, who gets insurance through his employer, said that several insurers — Aetna, Cigna, and UnitedHealthcare — hadn’t covered methadone at his clinic, Colorado Treatment Services. Most recently, he got on United again, which now covers the treatment, but only after a $5,000 deductible.
James, a 67-year-old in Maui, Hawaii, told a similar story: Methadone helped him stop using opioid painkillers while also addressing some of his lingering pain problems. But it costs $340 a month — and he is already past retirement age and still working, in part to pay for treatment. That money “is a lot for us,” he said. “I mean, $340 a month could be going into savings, retirement.”
James’s clinic told him that his insurer, Kaiser, won’t cover the treatment.
James said he’s also nervous about going through an appeals process that would link him to a condition and treatment that are both highly stigmatized. The stigma surrounding addiction is particularly potent with methadone, which even within addiction and recovery circles is frequently maligned as simply “substituting one drug with another.” The stigma is why Tony and James asked me not to use their last names for this story.
King, Tony, and James aren’t alone in their struggles. A 2019 report from Milliman, a consulting company, indicated that coverage for addiction treatment has gotten worse, relative to physical health services, in recent years. Lindsey Vuolo, the director of health law and policy at the Center on Addiction, similarly found there was an increase in the number of states with plans in individual market exchanges that explicitly excluded methadone coverage from 2014 to 2017.
“Insurance companies often pay for medications that are medically necessary, that a patient needs, that are determined to be effective,” Vuolo told me. “There should be no difference for methadone.”
Methadone itself is cheap, but treatment is not
Despite coming from different backgrounds and parts of the country, Tony, James, and King share similar stories of opioid addiction: They each began mostly on painkillers — King doctor shopped and bought pills from others, Tony borrowed them from his wife after she got back surgery, and James got them from doctors after a liver transplant. In King and Tony’s cases, misusing opioid painkillers eventually led to heroin. King also used benzos on the side.
But before their addictions got too bad, all three of them found methadone clinics. They all described the treatment as “a lifesaver.”
Methadone itself, widely available in generic form, is cheap: potentially less than $1 a dose. It can be used not just for addiction but also for pain treatment, where its low price has made it attractive to some health plans, including Medicaid. But in addiction care, methadone treatment costs much more, largely due to legal requirements for staffing, storage, security, and other services.
Some of the extra costs are legally mandated by federal and state laws. Methadone is only available for addiction treatment in the US at specially licensed clinics, known as opioid treatment programs. The requirements for these clinics can get granular; for example, federal law mandates that certified or licensed counselors be available to patients, and state laws often supplement that requirement by imposing staff-to-patient ratios to ensure certain levels of availability.
There are also special rules for patients themselves. For at least the first 90 days of treatment, patients must travel to the clinic at least six days each week to pick up their methadone dose, with few exceptions. Only after several months or years of methadone treatment, and testing negative for other drugs, can someone get enough take-home doses to cover weekends, a week, or sometimes more.
Mark Parrino, the president and founder of the American Association for the Treatment of Opioid Dependence, which represents opioid treatment programs, said that there’s a good case for the strict rules on methadone.
Since methadone is an opioid, it’s possible to misuse it and overdose on it — at least in less-regulated, unsupervised settings. There were more than 3,000 such overdose deaths in 2017. But most of those deaths, based on multiple investigations into the topic, were a result of methadone prescribed as part of pain treatment, which does not face the same strict rules as methadone dispensed for addiction treatment. That suggests, Parrino argued, that the rules for addiction care are likely averting misuse and deaths.
There is also a real-world example of what happens when methadone rules get too lax: In Denmark, a more liberal regime for the medication appeared to lead to more methadone deaths.
“As I look at it from a patient’s perspective, absolutely it is inconvenient,” Parrino told me. “I’m not trying to be critical of the patient’s reasonable concern. However, there are broader public health concerns.”
Still, the requirements impose a major burden on patients. Tony, of Colorado, recalled a Christmas interrupted because he and his wife had to get their treatment: “It was like, ‘Hang on, kids. Let’s unwrap one present, and then mommy and daddy have to go.’”
More recently, Tony’s wife was hospitalized due to a serious infection. After four months of inpatient care, she will soon be discharged. For a few days, it looked like the methadone clinic was going to make her go in daily for her dose after the discharge — a problem for someone in early recovery from a serious medical problem and with newfound mobility issues. The situation was worked out in the end when the clinic, after some back and forth, agreed to either let his wife come in weekly or get someone else to pick up the medication. But it’s the kind of scare methadone patients have to deal with on a regular basis when life doesn’t go as planned.
It’s those types of concerns and the rigidity of the rules surrounding methadone that make some people, like King, want to stop using the medication even if it helps them. Beyond the inconvenience, the rules add practical and financial costs — for example, in transportation expenses, limits around work schedules and business trips, and difficulty traveling during vacation.
Some experts and advocates argue that regulations on methadone could be relaxed in order to reach some sort of sweet spot in regulation between the US and Danish models. Vuolo, of the Center on Addiction, said, “I think we need to think thoughtfully about how to also increase access to methadone — which may involve changes to the regulations, but likely involves a combination of efforts, including improving insurance coverage and reducing other types of discrimination against methadone.”
The other two federally approved medications for opioid addiction, buprenorphine and naltrexone, don’t face restrictions quite as stringent. But that’s in part because they’re less risky: Methadone is a full agonist, meaning it fully activates opioid receptors in the brain, which carries a risk of addiction and overdose. Buprenorphine is a partial agonist, with a ceiling on its effect that subsequently makes it much harder to misuse or overdose on. And naltrexone isn’t an opioid at all, instead acting by blocking the effects of opioids.
But the risks come with advantages. As a full agonist, methadone doesn’t require someone to be in withdrawal to start treatment. Buprenorphine, as a partial agonist, requires partial withdrawal. Naltrexone, since it isn’t an opioid, requires full withdrawal — a process that, according to the research, generally makes it harder for opioid addiction patients to start on naltrexone. These and other pros and cons decide, along with each patient’s symptoms and circumstances, which medication works best for the individual.
Tony, for one, tried buprenorphine before, in part because his insurance did cover it. But it just didn’t work for him. Methadone has worked, despite problems with insurance.
Insurance plans resist addiction treatment, but especially methadone
In March 2018, King got what should have been good news: She was getting a raise at her current job. But there was a downside.
Thanks to the raise, King now made too much money to stay on Medi-Cal. So she got on Kaiser, which wouldn’t pay for SOAP MAT because it’s out of network for the plan. (Kaiser didn’t respond to questions about why SOAP MAT is out of network.) That led her to try the Kaiser-approved clinic at first — before deciding that the extra travel, copays, and, in her view, worse service weren’t worth it. So she went back to SOAP MAT, paying out of pocket.
“I think it would have been cheaper for me to not get a raise,” King said.
A Kaiser spokesperson told me that, in cases like King’s, the insurer can work with members to transfer coverage to out-of-network clinics, but requires them to call member services to file such requests.
Whether that actually leads to coverage is uncertain. Based on her own conversations with Kaiser, King said she believed it would not. She added that she was informed she had to call member services only after I started to report this article.
While federal and state laws in recent years have tried to push for more access for addiction treatment and especially parity between mental health care, including addiction, and physical health services, the evidence suggests that these laws are poorly enforced — with the White House’s opioid commission citing poor insurance coverage as a major contributor to the ongoing opioid crisis.
Milliman’s recent report found outpatient addiction treatment facilities were 8.5 times more likely in 2017 to be out of network than medical or surgical outpatient facilities in commercial insurance plans — which makes addiction care less accessible and more expensive than its physical counterpart.
Methadone coverage appears to be particularly problematic. As one example, data from the Kaiser Family Foundation shows all 50 states and DC cover the opioid addiction medication buprenorphine in their Medicaid plans, but only 40 states and DC cover methadone through Medicaid.
Medicare, meanwhile, is only starting to more comprehensively cover methadone for addiction treatment in 2020, while it’s covered buprenorphine for addiction for years (though with some hurdles).
When it comes to private insurance, methadone coverage problems may span most states. Vuolo’s team at the Center on Addiction found that twice as many states had plans in individual market exchanges that excluded methadone coverage than included it. And the vast majority of states had plans that didn’t mention methadone coverage at all — likely a bad sign.
“We really found poor coverage for methadone,” Vuolo said. “Seeing the number of methadone exclusions that we’ve identified, it does seem like insurance coverage for methadone is particularly problematic.”
I contacted all of the insurance companies named in this story. They said they take the opioid crisis seriously, are committed to making addiction treatment accessible, and have made changes in recent years to increase access to opioid addiction treatment, including methadone.
“Health insurance providers are covering evidence-based treatment for individuals suffering from addiction, including expanded access to [medication-assisted treatment], counseling, and behavioral therapy,” Cathryn Donaldson, a spokesperson for America’s Health Insurance Plans, told me.
The stigma surrounding methadone likely plays a role in poor coverage. James said he worries someone he knows might see him go into the methadone clinic; he’s told no one, except his wife, that he’s on the medication. Tony said he’s “scared to death about my employer finding out, due to the stigma.”
Some of that stigma is driven by the fact that methadone is itself an opioid, which has led to the harmful myth that it’s simply “replacing one drug with another.” There’s also a history of poorly run methadone clinics, Parrino of the American Association for the Treatment of Opioid Dependence said; this leads some, including insurers, to associate all of the clinics — unfairly — with bad addiction treatment.
Then there’s the costs. For multibillion-dollar insurance companies, $300 to $500 in a month may not seem like much at first. But given that some patients need to take methadone indefinitely, even for life, the cost can start to add up. (It’s similar to insulin for diabetes, which insurers have also cracked down on as the price has increased to hundreds per month.)
Some studies indicate that methadone treatment can save money since untreated opioid addiction can lead to more emergency room visits, treatment for other conditions such as HIV or hepatitis, lost productivity, and involvement in the criminal justice system.
But for insurance companies, the math may be different because there’s so much churn in the industry — as patients can change from one health care plan to another each year or as a result of major life events.
Sharon Reif, a senior scientist at Brandeis University focused on addiction health services, provided an example of the calculation that insurers might make: “If you’re somebody who has active opioid use disorder and you can no longer hold a job, now you’re no longer commercially insured. So insurers’ longer-term costs [due to untreated opioid addiction] may disappear fairly quickly.”
Insurers reject claims they’re deliberately under-covering addiction treatment. In response to the Milliman report, Donaldson, the America’s Health Insurance Plans spokesperson, said there are other factors that can contribute to poor insurance coverage of treatment.
“For example, there is a well-documented national shortage of behavioral health providers — coupled with many clinicians who opt to not participate in health plan networks — resulting in patients having to pay out-of-pocket for treatment or forgo altogether,” she said. “Further, as noted in the report, the findings were not attributed to any specific causes so the impetus behind the disparities is not fully clear.”
Whatever the explanation, the reality for patients is that they must balance the benefits of methadone treatment with the costs. So while King still worries about the risk of relapse if she were to get off methadone, she said she worries more now about what may happen if she suddenly couldn’t afford methadone any longer. If that were to happen, she would be forced by the clinic to rapidly taper off methadone — which can bring back excruciating withdrawals and cravings, a combination that itself often leads to relapse.
“My life would be a lot more comfortable if I didn’t have to pay for it,” she said. “I’m looking forward to not having to pay it any longer.”
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Photographs by Ariana Drehsler, a photojournalist and portrait photographer with a focus on social and political issues, based in San Diego, California.