For Americans under age 45, the most likely way of dying prematurely is opioid overdose. Stadiums full of people are dying, an average of 110,000 people each year and a recent Stanford Lancet Report predicts that, barring serious intervention, we will see over 1.2 million more deaths by 2030.
Methadone is the scientific answer to this problem, with potential to cut death rates by 50 percent or more. Buprenorphine, a more recently developed medication has similar outcomes but has also struggled to gain traction among providers despite recent deregulation efforts. (Buprenorphine is also much less regulated, and some patients turn to it despite preferring methadone simply because it is easier to get).
Despite the promise of these treatments, for many people being on methadone is simply worse than risking death. Things like daily dosing for decades, restrictive hours, long lines, superior attitudes of staff, and people watching you pee (to make sure you aren't cheating on a drug test) have most people who use drugs preferring a contaminated drug supply over being in treatment. Research shows that only 1 in 5 people who meet the criteria for an opioid use disorder (those most at risk of overdose) have ever been on methadone. If we have the tools at our disposal to solve the overdose crisis, why are so many Americans still dying?
For over half a century, little has changed about the methadone regulations, and the attitudes of providers toward people who use drugs have changed very little, too. Even during COVID-19 when the DEA allowed patients "take homes" to keep them from cramming into methadone clinics, not much changed. Many opioid treatment providers either didn't give the recommended number of doses, or only did so for a minimum amount of time, citing concerns about diversion (giving away or selling one's dose) or a lack of structure that they say patients need.
These types of concerns placed both staff and patients at an increased risk of virus transmission. While governments scrambled to implement vaccines and social distancing, other countries like Australia and Canada pivoted to pharmacy-based delivery of methadone. Meanwhile, by and large, patients in the U.S. continued crowding into clinics, spreading the virus to friends and loved ones.
Patients on methadone, and those who would otherwise be, are fed up with this type of mistreatment. During and after COVID, a national coalition of methadone patients, researchers and even sympathetic providers have coalesced with the hopes of sparking a conversation about reform. Big cumbersome lock boxes that make it obvious that a person is on methadone, random 24-hour calls back to the clinic for bottle checks, and forced counseling are all things that keep people away from treatment, according to the National Coalition to Liberate Methadone, a group led by current and past patients.
No other branch of healthcare uses the types of surveillance present with methadone, and there just isn't evidence to support them. It has been rightly stated that "a person on methadone is monitored more closely than a paroled murderer." What does it say about treatment when a person would rather risk death than seek it? As a one time methadone patient — and someone who owes my life to diverted methadone — I can say with confidence that the word "compliance" has a far different meaning in methadone clinics than in the rest of healthcare.
In methadone, the word compliance stands for adherence to a gauntlet of ridiculous rules, policies and attitudes that no other person seeking health care would tolerate. A new storytelling podcast "Naturally Noncompliant" chronicles the untold struggles of patients who refuse or fail to comply. Rather than the effective solution it could be, opioid treatment is too often part of the problem.
Too many Americans needlessly die from whatever illegal drugs happen to have in them, while a bird in the hand solution stays behind lock and key. Every day that a person plays roulette with illicit fentanyl or xylazine rather than seek treatment is a testament to the culture of cruelty against drug users that the methadone regulations create.
Last week, patients across the country came together in our fight to change these policies. "Liberating Methadone: Building a Roadmap & Community for Change," the first ever conference by and for people on methadone took place at NYU Langone, hosted by the university's Department of Population Health. Reformists took to the streets in open protest of the clinic policies and state and federal regulations keeping people away from lifesaving care. It isn't that we want the clinics to go away, there just isn't enough methadone to begin with and we want a choice of where to seek healthcare just like every other American. Past, present and future patients will no longer comply with the types of unscientific restriction that cause those who enforce them to treat people at risk of death like criminals.
People on the outside of this clandestine system assume that where there is smoke there must be fire. This is one of the main reasons methadone is so stigmatized to begin with.
"If we can't get methadone right, we are doomed to lose the battle against overdoses," says my colleague Louise Vincent, a disabled long-time methadone patient who struggles to get to a stable dose because of the daily dosing requirement and refusal of a nearby clinic to treat her due to urine drug screen results. Louise and I opened the recent Liberating Methadone conference with a call to silence in honor of the many preventable deaths our community has seen. The lack of access and substandard treatment that most people on methadone receive just wouldn't be tolerated anywhere else in healthcare.
Research in The Lancet found that during COVID patients who received "take home" medications and made fewer mandatory clinic visits experienced significant life improvements. They were able to reach a stable dose quicker by not having their dose reduced every time they couldn't make the trek or showed up a single minute late. Methadone patients have even begun calling the mad dash to a clinic before its doors slam in thier face the "Methadone 500." At clinics that did allow the recommended number of take homes there was little or no diversion, a major reason cited in defense of today's stringent rules.
During the '70s and '80s when the race and class wars against drugs were burning hot, the DEA ran its own campaign against methadone right alongside heroin, spotlighting instances of methadone diversion and overdose wherever they occurred and overblowing cause for concern relative to the burgeoning heroin overdoses of the era. The resulting rings of fire that methadone patients now routinely jump through faced little initial opposition. Until the current overdose crisis, methadone was seen to be just as much of a nuisance as any illicit drug; the rules that exist today emerged in a climate of either condescension or hatred toward people who use drugs.
It is time to rethink, revamp, and reform the way this gift of science is offered. Treating people who use opioids as deserving of the same right to healthcare as any other American demands an about face to the way methadone is delivered. As someone who owes my life to diverted methadone bought on California's heroin-filled streets as a teenager, treating drug users worse than everyone else didn't work then, and it certainly won't work now. Until our healthcare system accepts the miracle molecule of methadone and begins providing people with a safe supply of it, my people will continue dying in droves, while seemingly well-meaning doctors, nurses, counselors and citizens repeat the mantra on loop, "they just weren't ready yet."
Disclaimer: The editor of this commentary, Troy Farah, knows Aaron Ferguson through podcasting about drug policy.
