The rigmarole began before dawn, but everyone who gathered outside the hotel on the edge of New Orleans’ French Quarter was used to waking up at ungodly hours. Such is the life of being a person who takes methadone, a drug with a 60 to 90 percent success rate for treating opioid use disorder (OUD) and that’s delivered like none other, in highly regulated clinics across the country.
One missed alarm, traffic jam, or any unforeseen event can result in missing that day’s dose, which could trigger debilitating withdrawal symptoms like nausea and insomnia. Patients may also run up against a clinic’s punitive policies for minor infractions, such as doses held hostage until additional mandatory counseling is completed. Such policies date back to the early 1970s, when President Richard Nixon’s administration advocated for methadone as a means to control crime.
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To witness the formidable bureaucracy that people taking methadone must endure, I rode along with attendees of the 12th National Harm Reduction Conference in October who are on methadone maintenance as they went to get their dose at a local clinic. While most people on daily medications for chronic conditions don’t think twice about traveling, people who take methadone describe the experience as a stressful, tedious slog that takes weeks of preparation. For some conference attendees, traveling on methadone has proved nightmarish, earning its moniker “liquid handcuffs.”
“This is why I don’t travel very often, if at all,” Caty Simon, a long-time heroin user and activist who edits Tits and Sass, a media site by and for sex workers, tells me. Simon, 37, has been on methadone for 12 years, and flew in for the conference from Holyoke, Massachusetts. “I don’t have any dramatic story about the bureaucracy or doses being withheld. But it’s always the terror of having that happen that drives my fear of traveling.”
The Harm Reduction Coalition, the national public health advocacy group that hosted the conference, offered “courtesy dosing” to ease the burden on attendees and panelists taking methadone. The HRC paid for their daily dose and arranged travel between the conference hotel and the methadone clinic. Attendees on methadone had to have their home clinic fax “guest dosing request” forms to the New Orleans clinic at least a week in advance of the conference.
“Traveling is always a shit show,” says Aubrey, 33, who flew in from Boston. She requested that only her first name be used to protect her privacy. “It can take over two weeks to get the forms in, and in my case, it did.” Aubrey’s counselor faxed in her guest dosing form numerous times before getting confirmation from the New Orleans clinic.
Once patients arrived for their first guest dose, they had to present a valid ID, do an intake ($40), and, finally, the New Orleans clinic had to call their home clinic for confirmation before they could receive their dose ($15). Is your head spinning yet?
As the sun was rising, the Harm Reduction Coalition’s medical director, Kimberly Sue, called two XL Lyft rides bound for the New Orleans Behavioral Health Group, a methadone clinic that is open Monday through Friday from 5 AM to 11:30 AM, leaving a tight window for conference attendees. The clinic closes at 9:30 AM on Saturdays and isn’t open on Sundays, requiring attendees to bring or purchase a lockbox ($15) in which to store their Sunday “take home” dose.
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Sue tells me that people who use drugs, or people impacted by drug use, are central to the conference, which is why they’ve had courtesy dosing at every conference the HRC has hosted going on two decades (they host it every other year). “Having access to your medication that keeps you stable and able to be engaged in the conference is essential,” she says. “Methadone can be such a stabilizing force for people. And the fact that it’s so punitive and restricted is really a huge shame.”
Sue, who did her residency at Harvard’s Massachusetts General Hospital, explained her frustration over the fact that she can write a months-long prescription for methadone to patients with chronic pain, but she cannot prescribe the drug to her patients with substance use disorder due to the prohibitive regulations of the Drug Enforcement Administration. The framework doesn’t make any sense to her. “It doesn’t have to be this way,” she says.
Despite all that, Sue, who is also a medical anthropologist who’s studied the intersection of addiction policy and US prison systems, says the guest dosing worked out “surprisingly well.” Conference attendees also said the New Orleans clinic was friendly and efficient. Although, Sue says, “Terrible things did happen that were outside of my control.”
Sue is referring to one attendee on methadone who’s had particularly horrific experiences traveling, and who requested anonymity due to concerns she could lose her job as a university researcher. Even within the recovery community, methadone remains a highly stigmatized and underutilized treatment, despite doctors considering it (and another medication, buprenorphine) the “gold standard of care” for treating opioid use disorder. Both medications are on the World Health Organization’s list of “essential medicines,” right up there with oxygen and ibuprofen.
This woman, who we’ll call Amanda, attended a different conference in September, where she was scheduled to be on a panel, but her trip was cut short because of a hiccup in getting her dose confirmed at the clinic in the conference city. Her counselor back home didn’t call the clinic after sending in the guest dose form, and the clinic where she was a guest couldn’t get a hold of her counselor when she arrived for her first dose. She left with no dose. Amanda still made it to her panel that afternoon, but had to rush straight home to dose at her home clinic the next day, cutting her time at the conference short. (Because methadone has a relatively long half-life, missing one day might not cause intense withdrawal symptoms, but missing two or three days could be brutal.)
Shortly after that incident, in early October, her partner’s father died and the couple—who both go to the same clinic in their hometown—had to fly to another state for the funeral. They arrived at the new clinic too late to dose the first day, so they were told to come back the next day at 7 AM. “It wasn’t really explained thoroughly to me, but we were told because we missed a day, that we could only dose at 30 milligrams,” which was less than half of Amanda’s usual 70 milligram dose. The decision to reduce her dose for missing one day goes against the World Health Organization’s clinical dosing guidelines.
The couple started experiencing withdrawal at the funeral. “There was a huge lack of compassion and explanation,” she says. “Not one person from my home clinic, not even my counselor, called to ask how I—or my partner—was doing at that dose.”
After dosing at 30 milligrams for five days as a guest, Amanda returned to her home clinic thinking she’d be back at 70 milligrams. But fearing that her tolerance had diminished, her home clinic decided to keep her at the reduced dose. “This is not a functional dose for me,” she says. “I’m not OK.” Before she could resolve the arbitrary reduction by speaking with her clinic’s doctor, she had to fly to the New Orleans conference, where again she received the reduced dose.
She woke up with a crushing headache in New Orleans, and hopped into the caravan to the clinic wearing pajama pants and a hoodie. To ease the withdrawal symptoms, she has used heroin on top of the methadone. “I did cop in New Orleans just to try and stay well,” she says. “That’s exposing me to what? HIV, Hep C, death, possibly being incarcerated, all because of this whole fucking debacle.” Sharing injection equipment and preparing shots in unsanitary environments are all risk factors for being exposed to blood-borne diseases.
“In a perfect world,” Sue says, “I could have written her a prescription for methadone at that moment and she could have gone to a pharmacy and picked up a dose of 40 [milligrams]. I could have brought her up. I really wish I could have…I know that in other countries I could, so it’s very frustrating.”
Amanda’s dose remained at 30 milligrams for nearly all of October and into November. Recently, her dose was bumped up to 40 milligrams. “It’s a far cry from a stable dose,” she says. “My emotions are everywhere, and I’m still feeling withdrawal symptoms.” She says of the painful experience: “It’s like describing a panic attack to a person who has never had one.”
A recent study published in the Journal of Substance Abuse Treatment shows that her experience is not unique. Researchers analyzed survey data representative of methadone patients nationally and found a pattern of patients receiving doses below the recommended minimum, which is 60mg/day. The study also found that the under-dosing pattern was more common in programs that treat a higher proportion of African-American patients.
Public health experts view the expansion of methadone as a critical intervention for solving a crisis that has taken more lives than the wars of Vietnam and Iraq combined. And yet, the way methadone is delivered limits the number of people who can ultimately access it. Unlike buprenorphine, for which doctors with waivers from the DEA can prescribe 30-day take-home supplies, methadone remains out of reach for many patients with opioid use disorder. Patients often have to travel long distances to their home clinic and wait in long lines daily, eating up precious hours of their morning.
I asked the people interviewed for this story why they’re on methadone and not buprenorphine. Most had tried buprenorphine maintenance in the past, and found that they didn’t feel as stable on it as they feel on methadone. Amanda said most doctors near her who prescribe buprenorphine do not accept Medicaid, her insurance. She said she’d need $300 cash to make the first appointment.
Research by Helena Hansen, a psychiatrist and anthropologist at New York University, shows that patients on buprenorphine tend to be white and educated, while patients on methadone are typically black and Latinx and usually fall on the lower end of socioeconomic strata.
The methadone market’s crime control origins has had long lasting, insidious effects. “The Nixon Administration implemented methadone as a crime control measure, not as a medical procedure,” says David Herzberg, a historian of drugs and pharmaceuticals in America who teaches history at the University of Buffalo in New York. “The measure of whether it was successful or not was whether crime rates went down. I can’t think of another medical procedure that you evaluate how successful it is by crime rates.”
What this means practically for patients, Herzberg says, is that the overall system built around this drug wasn’t designed with people’s dignity and life goals in mind. “For all these poor, largely black, Latinx drug users, they’re really not seen as fully human,” he argues.
Race and class disparities, coupled with the way the methadone market was designed, fuels negative perceptions about the drug and the people who take it. Herzberg argues these disparities have disturbing effects, such as methadone patients being perceived as potential criminals who might commit crimes, as opposed to patients with an illness that needs to be treated.
“[With] buprenorphine, I could just give you a script and you can go where you need to go with your medication,” Sue says. “And when I give you methadone for chronic pain, those patients can go on vacation, those patients can take their medication on a cruise ship. It’s the same medication—I just can’t give it to you if I’m treating you for opioid use disorder. I’m legally not allowed to prescribe it to you.”
“All this regulatory framework is intended to keep me safe,” Simon, the harm reduction and sex worker activist, says, noting that the treatment has dramatically improved the quality of her life. “But instead, the draconian and arbitrary rules often put me in situations where I risk harm and overdose if I can’t jump through all the hoops necessary to get my dose.”
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