Max Sterling has to travel up to three hours every other week to get to the methadone clinic closest to his home in Joseph City, Arizona—an hour and a half there and an hour and a half back on the days when traffic is bad. While the 48-year-old former heroin user says the journey is costly, prohibitive, and annoying, it isn’t the most arduous barrier he’s faced since starting his current methadone maintenance treatment in 2009. His previous clinic, for instance, was located in Phoenix, three and a half hours away, and doled out the daily medication in smaller take-home amounts, requiring him to show up once per week. There was also the time his stepfather needed the family’s only functioning vehicle for a separate medical emergency. Sterling missed his appointment and was penalized: He was temporarily moved to daily visits.
Driving seven hours per day was not an option, but emptying his savings with an extended hotel stay for his entire family wasn’t feasible, either. But Sterling didn’t see any other options—the alternative was going without methadone, which would send him into opioid withdrawal. A few days into his time at the hotel, he appealed to employees and, just as easily as his take-home privileges had been revoked, they were reinstated, highlighting how arbitrary the punishment was to begin with.
Methadone is many things to many people. For individuals with opioid use disorder, like Sterling, it’s a life-saving medication that keeps them from experiencing debilitating withdrawal or seeking out an increasingly dangerous batch of street drugs. To scientists who study it, methadone is the “gold standard” in medically assisted treatment options for opioid use. But to the U.S. government, it’s a highly regulated Schedule II substance—akin to cocaine, methamphetamine, or fentanyl—and to adherents of abstinence-only and 12-step models of recovery, it’s just another opioid that disqualifies a person from claiming clean time or abstinence.
But when it comes to deciding who gets to access methadone and when, it isn’t patients or scientists whose opinion carries weight. More often, that privilege belongs to regulators or those who stigmatize it. Given methadone’s strict scheduling, access is usually curtailed under onerous laws dictating how it is dispensed—all with no uniform system, as clinics can set their own (often unclear) rules. Some give little warning for day-of physical check-ups, throwing off patients’ daily schedules. They can give patients 24 hours’ notice to come back and prove they’re not selling or doubling up on their at-home doses by showing their empty and full bottles to a staffer—or even require patients to call every morning to find out if they have a bottle check that day. Rather than signaling to doctors that a patient might need extra guidance or an adjusted dose, failing one of these tests or otherwise breaking a rule can result in their dismissal from a clinic that was likely not easy to get into in the first place, leaving them with nothing to stave off withdrawal. Well, nothing safe or legal.
Methadone’s price, regulation, and stigmatization make it frustrating to access across the country, but patients in rural and underserved regions face unique difficulties. The specialized clinics are largely located in urban areas, limiting the ability of those outside them to obtain treatment.
Methadone, a long-acting full opioid agonist and synthetic opioid, is a Food and Drug Administration–approved medication that can treat opioid use disorder. It can also be prescribed by doctors for pain management. Each patient’s dose is tailored to their individual needs, and when taken to treat opioid use disorder, methadone reduces opioid cravings and withdrawal while blocking the effects of opioids. The length of treatment varies for each patient, and some taper their dosage down under medical supervision in an effort to get off it entirely. While the National Institute on Drug Abuse recommends methadone treatment should last at least 12 months, some individuals and their providers opt for long-term maintenance plans.
Unlike buprenorphine, another medical treatment for people with an opioid use disorder, methadone can only legally be dispensed at an opioid treatment program, a clinic specially designed for the purpose. The federal government bans primary care doctors from prescribing it and pharmacies from distributing the medication. Methadone programs can be hard to get into because of waitlists or the financial cost—the National Institute on Drug Abuse reports that methadone can cost $126 per week, but the price varies widely, especially among for-profit clinics—not to mention the fact that transfer patients may have to give up some of the more convenient privileges they earned at their previous clinic, like take-home doses or leniency if they test positive for THC. Losing access can be frustrating to a patient in an urban area, who will have to switch to a different clinic, but it can be significantly worse for a patient who doesn’t have another clinic nearby.
“There’s drug dealers in every town,” as Sterling says, and they can be more accessible than the clinics designed to keep patients off illicit substances. Those dealers are reliable and charge consistent prices. They don’t revoke access to drugs for minor infractions or expect clients to show up every day at 6 a.m., regardless of what havoc that wreaks on their work schedules and personal responsibilities. But those dealers are also dispensing drugs that are increasingly cut with fentanyl, a synthetic opioid more powerful than heroin or morphine that is leading to a record-shattering epidemic of overdose deaths—predicted to top 100,000 in 2021 alone. And of course, street drugs can land a person in prison. Methadone access might come with a significant amount of red tape, but at least, with appropriate use, it won’t kill a person or get them locked up. Because regulations are so prohibitive at every level, however, getting on methadone isn’t always an easy choice. Advocates argue it should be, and President Joe Biden’s administration has taken notable steps toward broadening access, but for now, the process is still largely the same as it was in the 1970s—and it wasn’t great then.
The Urban Survivors Union, or USU, a coalition of former and active drug users, released its Methadone Manifesto last spring, urging an end to the exclusive clinic system overall and pointing to the success of alternatives in Canada, parts of Europe, and Australia, where patients can receive treatment via primary care providers and pharmacies. The union was far from the first group to suggest office-based treatment: A study published in the Journal of the American Medical Association in 2001 concluded that the transfer of stable methadone patients to primary care was both feasible and effective. The manifesto, written collaboratively by the union’s methadone advocacy and reform team, came over a year after some regulations around dispensing were temporarily scaled back by the federal government.
These efforts allowed more freedom for take-home doses at the onset of the Covid-19 pandemic, giving patients deemed stable by their clinics an opportunity to take home 28 days’ worth of medication at one time. Some clinics have been open to the allowances, but others—especially for-profit clinics—haven’t, as noted in a study published by the American Journal of Public Health. But even for clinics that did adopt the new flexibility, the changes are only temporary, for now at least.
Around the same time the USU released its manifesto, the George Washington University Regulatory Studies Center and Pew Charitable Trusts released the results of a study that urged the Substance Abuse and Mental Health Services Agency to extend and codify the pandemic-era changes. In late 2021, SAMHSA extended them another year, effective upon the eventual expiration of the Covid-19 Public Health Emergency, and signaled that results have been positive enough to warrant the consideration of making them permanent.
Last month, the Drug Enforcement Agency granted practitioners working in hospitals, clinics, and emergency rooms the ability to request an exception to dispense a three-day supply of buprenorphine or methadone for patients experiencing “acute opioid withdrawal symptoms.” That followed the DEA’s announcement last summer of a new rule designed to streamline registration requirements for methadone clinics looking to incorporate a mobile component, such as a van that could travel to underserved communities or jails. The agency has heralded both moves as proof of its “commitment to expanding access to medication-assisted treatment,” and while they are steps toward wider access, they come with their own sets of hurdles.
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“The problem is states impose their own restrictions on it,” says Dr. Stephen Loyd, vice president of the Tennessee Board of Medical Examiners and chief medical officer for Cedar Recovery. While he acknowledged the barriers at the federal level have been loosened, the battle for his clinic to use a vehicle to reach his rural patients has only just begun. “The problem becomes the different layers of regulations. It’s not the feds; these are state regulations that are preventing this from happening right now, along with local regulations. It’s a great idea for my patients … because it’s such a rural area.”
The issue of barriers to methadone access, especially for rural patients, far predates the pandemic. In her 2018 bestseller, Dopesick, Beth Macy highlights one Appalachian doctor who took it on himself, in the early 2000s, to raise the issue of local patients’ hours-long drives in letters to Purdue Pharma, the company whose prescription opioid, OxyContin, is widely seen as one of the drugs that ushered in the first wave of the modern opioid crisis. The second wave began around 2010, after the government stepped in to reduce prescriptions and Purdue reformulated OxyContin to be more difficult to misuse, causing many who were using pills to get high or stay well to turn to heroin and other street drugs to stave off withdrawal. The third wave began around 2013, as synthetic opioids like fentanyl infiltrated the illicit supply. Overdose deaths increased steadily as the stages of the crisis evolved, but unyielding regulations around access to evidence-backed treatment have largely remained the same through it all.
Sterling says that while methadone is elusive everywhere to some degree or another, he didn’t realize how cumbersome it would be to find access when he moved from an urban hub in California to his current location, an unincorporated community of a little over 1,000 residents in Arizona. When he lived in San Jose, he says, the clinic was five minutes from his house and “it was super easy to get there.” The seven-hour trips he started making after his move were “a hardship” for Sterling, who lost his biological father to a heroin overdose and got on methadone so he wouldn’t leave his children the same way. He took them with him to Arizona three years ago, he says, and their mother remains in active use in California.
He feels a lot of pressure to stay in the methadone program for his kids’ sake, but the program doesn’t make that easy. With access to just one vehicle that is shared among his family, he carefully schedules clinic days to make sure he gets his children to school, gets to the clinic, and gets back in time to pick them up. With the exception of the day his stepfather needed the vehicle for a separate medical emergency, Sterling has never missed an appointment.
In spite of all this hassle, Sterling considers himself one of the lucky ones. If he didn’t have a supportive family and solid insurance coverage, he says, he probably “would have stayed on heroin.” He’s known plenty of people who did that, typically because they couldn’t afford the $400 to $600 per month—in addition to long drives and wait times.
Another patient, Beck, who asked not to be identified by her last name over concerns of privacy, has been on methadone for eight years. Three years ago, she moved to Indiana and had to start traveling two hours one way for her weekly clinic visits, on top of working in a factory seven days a week. “It was extremely challenging working second shift,” she says, “then coming home at 11:30 at night, then getting up at two in the morning to be at the clinic at four to get a spot in line so I could get home between 6:30 and seven, go back to sleep, and go back to work at two in the afternoon.”
Like Sterling, Beck still tries to look on the bright side because she knows others have it even worse: “Fortunately, I was in a situation where I had a reliable vehicle and money.… I was also fortunate in that sense that my counselor did not require me to go to classes or to meet with her as much.” (Counseling is a requirement in medically assisted treatments, and the resources offered at clinics are often cited as reasons to continue forcing patients to keep showing up.) Beck says the “taboo” around methadone is what keeps clinics out of rural areas, “especially in more conservative states.”
That Sterling lost his take-home privileges because he was without a car one time and Beck cited her reliable vehicle as the reason she’s been able to stay in treatment are not coincidental. In 2019, a group of Yale researchers published a study examining drive times to the nearest clinic in urban and rural counties in five states with the highest county rates of opioid-related overdose deaths. In the Journal of the American Medical Association, they concluded the long drive times were a barrier to care and suggested that federally qualified health centers could be granted dispensing permission or, at least, more clinics could be built in rural areas.
Abby Coulter, a methadone liaison at the Urban Survivors Union, adds that in addition to the issues surrounding individual vehicle access, many rural patients don’t have convenient public transportation, meaning a trip that might be relatively short by car can take up their entire day when done by bus.
Methadone patients experience their time at clinics as “counterintuitively constant and unstable,” explains Dr. Jennifer Carroll, a harm reductionist and researcher who serves as an adjunct assistant professor of medicine at Brown University. “The constants are having to go every day, having challenging conversations with the doctors about what’s going on in your life, having hours that are really inflexible, rules that are really inflexible, and certain types of policies that make people feel a little bit dehumanized.” Conversely, the coexisting instability comes from how many factors could suddenly result in loss of medication and, then, withdrawal and all that can come with it: anxiety, insomnia, vomiting, cramping, body aches, fever, shaking, and diarrhea, not to mention a potential return to more dangerous illicit use.
“What I think is amazing is that in methadone care, people are removed from care for reasons of payment or any reason that has nothing to do with their health or a successful treatment,” Carroll says, noting this happens so often that there’s a unique name for it: “administrative discharge.”
The threat of losing take-home privileges or facing administrative discharge is especially daunting for patients who are already traveling so far for their care, so they abide by that clinic’s rules, even when those cause more frustration. “I never know,” Beck says, “what is state regulations or just clinic regulations.… They make up a lot of their own rules that hinder people and make their lives more difficult than they should be.”
Coulter hopes that in the coming years, office-based treatment will become available in the United States and “that the access for all of us—in urban and rural areas both—is expanded in ways that community-driven and led research and science have proven effective.”
If that happens, Sterling says, “it would be a life-changer for everyone on methadone. We’d be like everyone else who has to take medicine every day.”