Urban Survivors Union (USU), the American national drug users union, is a coalition of drug user unions, organizations led by drug-using sex workers, and other groups affected by the drug war. Founded in 2017 by three long-standing regional unions, it includes more than 30 chapters and affiliate groups throughout the country. People who use drugs lead the union and perform all of its functions. At USU, we prioritize the leadership of people of color, low-income team members, and people from underresourced states.
Our organization uses collective decision-making and team-based systems because of philosophy and necessity. We all face death or incapacitation at any time from overdose, incarceration, poverty, illness, mental health issues, trauma, and disability. Thus, we take on projects in two-person teams, share skills, and provide mentorship. We host national weekly virtual presentations by people who use drugs on organization, skill building, and prevention tips. Topics have included harm reduction during COVID-19, domestic violence, and establishment of local drug user unions. We also hold frequent Webinars to circulate critical information quickly through our national community. We share grant calendars and training, monitor legislation, teach members how to track state and municipal politics, and build power among local organizers.
When the COVID-19 pandemic began, USU members were particularly affected because people who use drugs are at high risk for hospitalization, morbidity, and mortality from COVID-19 infection.1 In addition, overdose2 and hepatitis C virus rates are rising.3
Many USU members receive methadone maintenance treatment (MMT). MMT is heavily regulated, creating multiple barriers that restrict its efficacy,4 although it is widely considered one of the best ways to reduce fatal overdoses and other harms of criminalized opioid use.5 MMT regulations were relaxed during COVID-19.6 However, we observed that many MMT programs were not relaxing policies, overdose rates were increasing among our members, and COVID-19 was altering the illegal market infrastructure and increasing our reliance on potent synthetic opioids and poisonous adulterants.7,8
In April 2020, USU released an open letter garnering 140 organizational signatories that advocated further opioid agonist treatment reform to protect patients from COVID-19 and overdose.9 Next, USU focused on MMT reform. USU supports broader buprenorphine maintenance treatment (BMT) access, particularly eliminating racial and socioeconomic differences in access.10 However, for many of us, BMT does not work but MMT does.
In our experience, buprenorphine induction can be traumatic because it requires severe withdrawal. As fentanyl analogs have replaced heroin in the opioid street supply, BMT induction has become more difficult.11 According to one member: “Moving to bupe with fentanyl on board is almost impossible . . . it’s guaranteed precipitated withdrawal.”
BMT patients whose goal is moderation rather than abstinence risk precipitated withdrawal when using other opioids. One member described precipitated withdrawal as “total fucking agony . . . all the usual symptoms of opioid withdrawal but exponentially multiplied.”
Even when induction succeeds, many report never feeling free from withdrawal while in BMT. In the words of one member: “The way buprenorphine made me feel was absolutely horrible. It was just this odd, weird feeling of being halfway to where I needed to be all the time.”
Thus, for many reasons, MMT is vital, especially now that fentanyl dominates the illicit opioid supply.12 In the absence of safer, legal, short-acting opioids, as one member said, “methadone is our safe supply.”
Soon after we started advocating for MMT reform during COVID-19, one member was restricted to a low dose by her methadone clinic. To avoid withdrawal, she supplemented her dose with street opioids she knew were dangerously contaminated. She said:
The street opioids were killing me, and I was furious that [this could even happen to] someone with an enormous amount of privilege such as myself. I’m meeting with the [State Opioid Treatment Authority] every month and they are watching me die in real time.
Her struggle and anger resonated with the rest of the team. While she was hospitalized because of drug poisoning, we created the Methadone Manifesto13 so that other MMT patients would know they were not alone. This manifesto is a living document written collaboratively by USU methadone advocacy and reform team members—current and former methadone patients, activists, patient advocates, MMT staff, and trained researchers—all affected by MMT practices during COVID-19. In the manifesto, we highlighted MMT research gaps through our experiential knowledge as patients and patient advocates, outlined how certain policy and clinic practices do not align with patient needs, and proposed solutions for treatment reform.
We developed the manifesto through literature reviews, interviews and auto-ethnographic accounts from team members, weekly two-hour meetings, and group conversations and texts based on collective lived experiences. We detailed the treatment barriers we observed as MMT patients and advocates for hundreds of patients. For example, the issue of urine drug screening video surveillance was raised by a trans team member who overheard MMT staff mocking the bodies of other trans patients viewed on camera. We disseminated the manifesto through our Web site, published excerpts in media, held a Webinar, and shared the document with progressive opioid treatment program directors, state opioid treatment authorities, and policymakers.
There is a long tradition of using experiential knowledge to advance research; many disciplines, such as critical race studies and disability studies, have recognized its importance.14–16 Sharing our experiences is a form of exercising authorship over how drug use scholarship describes us.
In this editorial based on the manifesto, we focus on a few MMT barriers we have experienced and suggest improvements (Box 1). Specifically, we discuss issues during COVID-19, take-home doses, counseling and treatment plans, costs, and issues faced by parenting patients and patients in the sex trades.
BOX 1— Recommendations for Improving Access to Methadone Maintenance Treatment (MMT)
| Problems during COVID-19 |
|
| Take-home doses |
|
| Counseling and treatment plans |
|
| Costs |
|
| Parenting patients |
|
| Patients in the sex trades |
|
| Broader recommendations |
|
Note. SAMHSA = Substance Abuse and Mental Health Services Administration.
Many of us have high COVID-19 hospitalization risks as a result of comorbidities. When the pandemic began, we also worried about exposing loved ones to infection because of our frequent clinic visits. When the Substance Abuse and Mental Health Services Administration (SAMHSA) released guidance to opioid treatment programs relaxing some of the MMT restrictions that had been in place for more than 40 years, we were initially relieved.
However, many of our clinics did not increase take-home doses or provided patients with only a few doses rather than the 14 to 28 allowed, stating that they feared diversion or believed that patients required the stability of frequent in-person dosing. Some clinics switched counseling to telehealth, but some continued mandatory in-person sessions. Others allowed crowds within buildings and did not distribute masks to patients. In some, neither staff members nor patients were required to wear masks.
In addition, many clinics revoked increased take-home doses within months.16 Some MMT directors cited difficulty filling multiple take-home bottles, and others stated that they were acclimating patients to frequent in-person dosing in case SAMHSA reversed its relaxations.
Research subsequently showed that, as we experienced, methadone programs unevenly implemented COVID-19 take-home relaxations.17 Yet, the relaxations implemented demonstrated that the primary reasons for restricting methadone access—to reduce diversion and decrease fatal overdose risks—may be unfounded.18 A Connecticut study revealed that methadone-related fatal overdoses did not increase during COVID-19, and a study involving a USU chapter showed little self-reported diversion.17,19
In late spring 2021, some MMT programs and state addiction bureaus asserted that COVID-19 relaxations were unnecessary now that vaccination was available. Yet, many MMT patients have low incomes or are people of color, and these groups have been harder hit by COVID-19 and vaccinated at lower rates.20,21 Moreover, many MMT program directors and researchers believe that these relaxed guidelines should be permanent.22
In our experience, in-person dosing impedes patient well-being. According to one USU member: The basic day-to-day functioning of life is obstructed by going daily. . . . I can’t think of one positive thing about daily dosing. Maybe you’ll be late for work, you’ll lose your job, since you can’t [predict] how long you’ll be in a clinic line.
Federal guidelines stipulate that opioid treatment programs must operate during hours that meet most patients’ needs, including outside the 8 am to 5 pm Monday through Friday work schedule, and clinics with expanded hours report higher patient satisfaction23; however, in our experience, many clinics offer only limited morning dosing, and some change dosing hours monthly with little notice. Many patients’ daily routines and employment are curtailed by limited hours.
We have also observed that many patients who must dose in person frequently and who have transportation difficulties quickly accumulate missed doses. MMT programs drastically reduce doses after two to three missed days and, after additional missed doses, may terminate treatment. Thus, many patients are at increased risk for overdose because they supplement reduced or missed doses with illicit street opioids or rely on them after treatment has been terminated.
Research has shown that in-person dosing is no more protective than take-home dosing with respect to illicit opioid use, diversion, or mortality.24 In addition, take-home dosing increases retention and helps patients maintain employment.25,26
In our experience, MMT program rules also make maintaining take-home dosing difficult. For instance, MMT program lock box requirements for take-home dosing advertise patients’ MMT participation, violating their confidentiality and possibly exposing them to theft and assault. Houseless patients and street-based sex workers who store take-home doses in lock boxes often have no place to store the boxes, so they carry them and are often robbed by opportunists. No other medications, including other opioids, require lock box storage. It is also noteworthy that many clinics require patients to return empty take-home bottles or have their take-home privileges revoked or reduced. However, there is no evidence that bottle return requirements improve patient health.
Weekly or biweekly counseling and group sessions are usually mandatory for MMT patients, even though there is little evidence that mandatory counseling contributes to positive outcomes.27 In our experience, mandatory counseling is rarely therapeutic, and counselors’ directive presence in group sessions is counterproductive. It is optimal to form trusting relationships with counselors, but trust is difficult to establish in mandatory treatment.
In our experience, disciplinary measures and the general course of treatment are often decided in counseling. Counselors frequently determine federally mandated patient treatment plans that outline patients’ short-term goals, influence dosing decisions, and are periodically reassessed. These treatment plans rarely reflect patients’ actual goals and are often written without patient input. We are usually asked to sign the finished document through an electronic signature system without warning and without adequate time to read it or an opportunity to read it at all. When we ask to review the plan, our day’s dose is usually withheld until we sign. Attempts to contact counselors to make changes delay our dose. Many states allow treatment termination if patients are noncompliant with treatment plans.
Furthermore, in our experience, counselors at many clinics exclusively promote abstinence models, which have been shown by research to increase overdose risks upon termination.28 People with other treatment goals, such as harm reduction, are often denied MMT.
MMT can cost up to $250 a week. Uninsured patients who cannot pay that amount weekly are charged for doses daily. In our experience, if patients cannot pay for their daily dose, clinics allow them to defer payment for only a few (if any) doses. Then, if patients are still unable to pay, they are forced into financial detox, during which their dose is quickly lowered. These practices push patients toward street opioid use and increased overdose risk. According to federal guidelines, no patients should be discharged while physically dependent on MMT unless they are permitted to detox from the drug. The accelerated financial detox tapering schedule used by clinics does not allow patients to detox sufficiently, causing months-long withdrawal.
Parenting patients face treatment barriers including transportation, child care, and family court and child welfare cases.29 In our experience, parenting patients’ struggles are rarely recognized by MMT programs. Usually, their needs are addressed only during pregnancy. For example, clinics often will not discharge patients perinatally regardless of their ability to pay. Yet if the balance is not brought current postnatally, the childbearing parent will often be financially discharged postpartum.
Some MMT programs do not allow children on site, creating retention problems for parenting patients,30 even though voluntary integrated treatment programs for parents and children have been found to increase retention and provide long-term benefits.31 In other programs, we have observed parents being scapegoated for restless children’s behavior by staff and patients.
We have often witnessed clinics violating child abuse reporting requirements. For example, one advocate heard from a poor mother of color whose clinic reported her to the state’s child protective agency, not for physically harming her children but for returning a family member’s bottle instead of her own. There is a long history of violation of the reproductive rights32 of people who use drugs, especially those of color, that we feel is exacerbated by the practices of some clinics.
Sex work, particularly street-based work, is associated with poor MMT engagement and retention.33 Limited dosing hours can lead to missed doses for sex workers who generally work nights and do not have set hours. Expanded hours are critical for sex workers’ access to health care, especially in the case of street-based and drug-using sex workers.34
Also, in our experience MMT counseling can be a hostile environment for sex workers. Some clinic counselors conflate all sex work with trafficking or understand it as a psychological problem rather than an economic survival strategy. Thus, sex-working patients may hesitate to disclose to counselors. If patients disclose, some counselors see sex work as a sign of instability, disqualifying patients from take-home dosing eligibility. Counselors may urge patients to quit sex work before they want to do so or before they have viable economic alternatives. Such stigma negatively affects sex workers’ health and health care access and is associated with psychological distress.34,35
Mandated MMT group counseling can also be difficult for sex workers. One member reported that throughout 15 years in MMT, she has never identified as a sex worker in group counseling because of derogatory comments about sex work from group participants and counselors. In one study including MMT patients, women involved in street-based sex work reported feeling unable to disclose sex work in group drug treatment, fearing stigma and unwanted advances from male patients.36
Our experiences as MMT patients and advocates show that the MMT system has many underexamined problems, exacerbated by COVID-19 and for people with intersectional challenges. We feel that punitive high-threshold clinics make people reluctant to enter treatment and reinforce perceptions that MMT difficulties result from individual noncompliance rather than institutions misaligned to patient needs.
Ideally, MMTs would integrate harm reduction practices and person-centered care, even within the current regulatory environment. Some existing MMT programs are already moving toward this ideal, such as the Community Medical Services opioid treatment on demand clinics in Arizona, Ohio, and Wisconsin, which offer 24-hour induction and expanded dosing hours. As one USU member noted, “MMTs do not have to change much about how they operate to operate in a humane way.”
For decades, drug user unions have protected the lives of people who use drugs, collecting and disseminating vital information, distributing life-saving supplies, and developing leadership among drug user organizers. Our input on affected people’s experiences is invaluable to community-driven research and policy, including work on MMT reform.
We hope that our work inspires further community-driven research on MMT. Ideally, the approach described in the manifesto and this editorial, combining literature reviews and experiential observations, will be used by patients in other drug treatment systems or with stigmatized conditions (e.g., HIV or hepatitis C virus) to rapidly outline underresearched problems, especially during times of crisis such as COVID-19.
ACKNOWLEDGMENTS
We thank the Urban Survivors Union methadone advocacy team and everyone who volunteered their time on this project, especially Yarelix Estrada, Mimi Cove, Illaria Dana, Aaron Ferguson, Peter Moinechen, Josie Carrier, Nabarun Dasgupta, Jennifer Carroll, and Riley Kirkpatrick. We are grateful for help and support from Medication Assisted Treatment Support & Awareness and the North Carolina Survivors Union. We thank all of the grassroots organizations that have come before us, the communities that created models of community-directed research that inspired ours, and the drug user organizers who have lost their lives to the overdose crisis and the war on drugs.
CONFLICTS OF INTEREST
The authors report no conflicts of interest.
