Maintaining Stigma for Decades
MELISSA WAS FIGHTING her abusive ex-husband for custody of their young son amid a three-year-long divorce process. Her mother had recently passed away, leaving Melissa without family support. A licensed practical nurse in the local hospital, she struggled to care for patients as her own life disintegrated—not that her life had ever been easy.
As a young child, Melissa had survived a traumatic car accident, one in which she witnessed her uncle, the driver, die. For years she received regular steroid injections for the resulting chronic back pain. Back then physicians never offered her opioid treatment, except for the few days in the hospital immediately following the accident. But times were different now. In the hospital, Melissa saw physicians routinely prescribing opioids for chronic pain. Nevertheless, she had never seriously considered opioids as a treatment option for her back pain until Elizabeth, an older nurse practitioner in the same hospital, offered Melissa some of her own Lortab, a brand name for the opioid hydrocodone.
Perhaps Elizabeth understood what she was doing—introducing a vulnerable single mother to a highly addictive narcotic. Or maybe Elizabeth truly thought Lortab would help manage Melissa’s pain with few repercussions. Her exact words to Melissa had been, “I think this will help your back.” Or maybe Elizabeth meant the Lortab to serve as a kind of antidepressant for her coworker, one who was clearly struggling to get through each twelve-hour shift. Either way, Elizabeth, who according to Melissa is “unfortunately no longer with us in body,” eventually caught onto the fact that that her colleague had become fully addicted. Nevertheless, Elizabeth continued supplying Melissa with more and more pills. To Melissa, Lortabs were miracle pills, boosting her mood and energy while relieving her physical pain. Explaining her relationship with Elizabeth, Melissa said, “I think we saw each other eye to eye for what it was. I felt an underlying connection with her, like this is what it is and it’s not ethical, but hey, we are working, we are helping people with serious illnesses in the hospital.”
But soon the sporadic pills provided by Elizabeth were not enough, and Melissa went one step further—she called in a Lortab prescription to the Walmart pharmacy under Elizabeth’s name. Elizabeth was, after all, a nurse practitioner who could prescribe opioids for patients. When no one noticed, Melissa did it again, soon establishing a routine. The state’s prescription drug monitoring program was not yet mandatory or else pharmacists might have noticed, though Melissa believes she prompted the change in her state’s prescription drug monitoring regulation. Not surprisingly, until then, physicians and nurses already pressed for time rarely checked the prescription drug monitoring program since they were not required to do so.
Then one day out of the blue, Melissa had a call from her friend, Ashley, another licensed practical nurse. Ashley collaborated with the state’s nurse licensing board on investigating ethical violations, and Melissa’s name had come up. Over the phone, Ashley warned Melissa: “Don’t pick up any more prescriptions. If you do, the police will be waiting for you.” Melissa didn’t pick up her next Lortab prescription, but the licensing board still contacted her a few days later. They believed she was illicitly and fraudulently prescribing herself opioids. An ethics hearing would be held wherein the board would decide whether to suspend her nursing license.
Technically, Melissa could have brought an attorney to the hearing, but she couldn’t afford one. And since it was an ethical violations case rather than a criminal case, the government had no obligation to provide her with an attorney. After exhaustively reviewing relevant prescription records, the board suspended Melissa’s nursing license. They listed her name with her picture on the board’s public website, humiliating her. Her ex-husband used this information to win sole custody of their child, claiming that it was in the best interests of the child to stay away from Melissa. To get her nursing license back, Melissa needed to attend an addiction treatment program for nurses followed by a probationary period of working under another nurse.
The mandatory abstinence-based treatment program prohibited medication-assisted treatment. The program emphasized twelve-step group attendance, something evidenced by a paper supposedly signed by the weekly Alcoholics Anonymous or Narcotics Anonymous chairperson. Of course, AA and NA are anonymous, so it is virtually impossible for authorities to ensure compliance, since they cannot obtain the chairperson’s name or contact information, except for a scribbled signature. Melissa grudgingly attended a few AA meetings. She didn’t see what God or spirituality had to do with her addiction. Plus, amid withdrawals and serious cravings, she didn’t pay much attention to the discussions. So Melissa stopped going to AA, instead forging the rotating anonymous chairperson’s signature on documents submitted to the licensing board.
In addition to twelve-step group attendance, the board required participation in group counseling sessions. These she likewise found ineffective as they basically repeated the information provided in AA by helping you “work through the steps” with worksheets and forced discussion. Despite having found the entire mandatory treatment process a joke, Melissa passed with flying colors, and the nursing board temporarily reinstated her under another nurse for a probationary period. But Melissa’s physical and psychological cravings and emotional problems remained.
Shortly after beginning the probationary period in a different hospital unit, Melissa resumed her old game. Except this time, using a different nurse practitioner’s information, Melissa called in prescriptions for a friend. The friend picked up the prescriptions and split the pills with Melissa. It wasn’t too long before the nurse under whom Melissa worked noticed the classic signs of opioid use: pinpoint pupils, nodding off, and constant itching. Clearly, Melissa was misusing again. But the supervising nurse had no proof of actual misuse or diversion, so she didn’t report it. Perhaps it was nurse camaraderie, an instinct to protect each other against intrusive authority. Nevertheless, the supervising nurse fired Melissa for nebulous reasons, likely to protect herself from any potential liability.
Jobless and childless, Melissa felt hopeless and worthless. She had tried multiple times to quit cold turkey, but it had never worked. As a last resort, she drove to the closest methadone clinic, about one hour away. She felt strangely out of place there despite being surrounded by people with the same problem: compulsive opioid misuse despite terrible consequences. Perhaps it was the part of town in which the clinic was located, with homeless people and empty beer cans lining the sidewalk, only a liquor store and some gas stations in sight, that made her feel so uncomfortable. But with nothing left to lose, Melissa walked into the methadone clinic, briefly explained her situation to the receptionist, and was told to return in five days.
A few days later, Melissa drove the hour-long distance to the methadone clinic. It was strangely empty this time, since her appointment took place during nondosing hours. The physician examined her, asked for a urine sample, and took a full history. Melissa held nothing back. He prescribed the minimum methadone dose and told her to return for her medication the next day at 5:00 a.m. Technically, she could come any time between 5:00 and 7:00 a.m., but people with jobs, disabilities, or young kids got priority, and the line could be very long. Melissa was advised to come early. She then briefly met with a counselor who gave her a mental health history assessment to determine any additional psychological needs.
The next day, Melissa began a two-year routine of waking up at 3:00 a.m., dressing, eating breakfast, and driving the hour to the methadone clinic. By 4:00 a.m., cars and people on foot circled the block, waiting for the clinic to open. At 5:00 a.m., the doors opened. Patients would check in with a receptionist, who seemed to always be counting piles of cash since the clinic did not accept Medicaid and few patients had commercial insurance. After paying, patients lined up as if waiting for a popular Disney ride. Once Melissa finally got to the front of the line, a technician directed her to one of four bulletproof windows. After checking her identification, a nurse behind the glass handed her a red plastic cup of liquid methadone, watched her drink it, and then asked her to state her name—a method of ensuring that patients swallowed the methadone, since it’s hard to speak with liquid in your mouth.
MELISSA BEGAN HER methadone treatment like everyone else did, at “level one.” That meant she was required to attend the methadone clinic daily, seven days per week. She frequently gave urine drug screens to prove consumption of methadone rather than diversion to the black market. After about two weeks of the physician slowly increasing the dose, her body adjusted to the methadone, and she felt her cravings for prescription pain pills diminish. Fortunately, so long as she took the methadone daily, she also didn’t experience withdrawal symptoms. She did experience some sweating and constipation from the methadone, though these side effects were minimal compared to the ups and downs of chaotic drug use.
The methadone clinic also required Melissa to attend weekly group counseling and weekly individual counseling while she was at level one. Sometimes the group counseling sessions were helpful, especially if the group counselor listened rather than spoke down to the participants. But other times the groups were led by a young college student with no clear understanding of addiction and who read straight from a book. It was like story time for adults, and Melissa felt patronized.
Unfortunately, it took two months before Melissa could obtain an individual counseling session, which she felt would better address her mental health issues. For weeks she left notes under counselors’ doors trying to get their attention, but the clinic had hundreds of patients and only a few counselors. And according to clinic rules, until Melissa could prove regular individual counseling attendance, she could not advance to level two, which would only require her to come to the clinic six days per week. She longed for one day per week when she could sleep in past three in the morning.
Finally, Melissa obtained an individual counseling appointment, but then she was quickly introduced to another problem—vanishing counselors. During her two years at the methadone clinic, Melissa saw seven individual counselors. By now I have heard so many stories of vanishing methadone clinic counselors that I’m surprised whenever a patient has the same counselor for more than a few months. Melissa described multiple instances of patients banging on the door while she was in the middle of a counseling session, desperate for their own sessions, prompting the counselor to check his or her watch. Eventually the clinic pasted signs on counselors’ doors: “Do not knock while counseling is in session.”
Melissa found the individual counseling sessions helpful but only when she liked the counselor. And given the high turnover rate, as soon as Melissa found a counselor whom she liked, that counselor disappeared. Furthermore, Melissa had no say in choosing the counselor to whom she was assigned. She even had two antimethadone counselors in the clinic who urged her to stop methadone treatment, telling her that methadone was not real recovery even though she no longer misused opioids. That’s not as rare as you might think. In the course of writing this book, I have encountered other stories of antimethadone counselors working in methadone clinics.
DURING HER TWO YEARS at the methadone clinic, Melissa obtained an online certificate in business management. She has no passion for business and in conversation still calls herself a nurse, even though she can no longer legally practice as one. With the business certificate, she obtained a position working for a retired anthropology professor who, despite retirement, was authoring a book. Describing the work, Melissa says, “Basically, I was his computer. He didn’t know how to check or answer email.” The position had low pay and no health benefits.
To be at the professor’s house by eight o’clock every morning, Melissa had to provide the methadone clinic proof of her work, allowing her to dose early. Pay stubs were insufficient proof of employment; only a letter on employer letterhead addressed to the clinic would suffice. Fortunately, Melissa’s employer was kind and understanding, but she fears that many people get fired just for requesting such a letter. I suspect that most employers don’t realize substance use disorder is covered by the Americans with Disabilities Act.167 In other words, it is illegal to fire an employee merely for having the disorder or participating in treatment unless that employee is still actively using drugs.167 Not only are employers unlikely to know how the Americans with Disabilities Act applies to substance use disorder, employees are probably unaware as well. And employees in Melissa’s position can rarely afford an attorney to advise them of their civil rights.
Eventually it was time for Melissa to move on to a new job. The professor had finished his book and was now truly retiring. With a letter of recommendation from the professor in hand, Melissa found a new job at her city’s department of motor vehicles, a job with health benefits and promotion opportunities. But the office was very strict about timeliness, and Melissa felt extremely uncomfortable disclosing her addiction and methadone treatment to her supervisors. By now she had two take-home days of methadone, both on the weekend, but she was tired of driving to the methadone clinic each weekday before work. She racked her brain for other options.
Under federal and state law, she could obtain a prescription for methadone for pain management from any physician, nurse practitioner, or physician assistant. With such a prescription, she could legally acquire the medication from a regular local pharmacy on a monthly basis, rather than daily. Following the advice of a friend, Melissa wrote a heartfelt letter to a new nurse practitioner in a family medicine practice, just a few minutes’ drive from Melissa’s house. In the letter, Melissa described her car accident, her back pain, and her history of opioid addiction. She described her attendance at the methadone clinic, how she had to wake up daily at 3:00 a.m. to get in line to dose at 5:00 a.m., sometimes waiting in line for an hour, and then drive back to work. Melissa delivered the letter to the nurse practitioner’s office. She didn’t ask for anything in the letter, other than saying that she’d really appreciate an appointment. Expecting to hear nothing back, Melissa was surprised to receive a phone call stating that she had an appointment as a new patient.
A few days later, shaking like a leaf, Melissa visited the nurse practitioner. She repeated the story she’d told in her letter, again asking for nothing in particular. The woman looked Melissa squarely in the eyes and said, “I am going to write you a methadone prescription for your pain.” But on the prescription pad, she wrote the dose and frequency of methadone given for addiction treatment, not pain. A few hours later, Melissa picked up a month’s prescription at the local grocery store pharmacy.
To this day, Melissa does not know why the nurse practitioner did what she did. As far as Melissa could tell, she had no formal training or experience in addiction medicine. Maybe it was another example of nurse camaraderie. Melissa has no doubt that the woman prescribed methadone with addiction treatment in mind, although Melissa does believe that the methadone helps with her back pain as well. For almost a year, she continued receiving monthly methadone prescriptions “for pain” in this fashion.
Then one day, Melissa tried to make an appointment through the office’s online patient portal but received no response. Worried, she walked into the family medicine practice and explained that she wanted an appointment with her nurse practitioner. The receptionist coolly stated that the nurse practitioner no longer worked there. In panic, Melissa asked if she could speak to the nurse practitioner’s medical assistant. The receptionist said the medical assistant likewise no longer worked there. Shaking, Melissa explained that she was never told the nurse practitioner was leaving; she had not received a letter or any notice. The receptionist said not to worry, that they would reschedule Melissa with a new provider, a physician who had recently joined the practice.
A few days later, Melissa anxiously waited to meet her new provider in the examination room. When the physician arrived, before even saying hello or introducing himself, he exclaimed, “Just so you know, I don’t prescribe methadone.” Instead, he offered Melissa a referral to a pain management specialist and physical therapy. Back in her car, Melissa sobbed behind the steering wheel. She dreaded resuming her trips to the methadone clinic. Having quit the clinic over a year ago, she would have to start again at level one. In a panic, Melissa called her close friends, begging them for advice. She even briefly considered buying methadone off the street, but she feared it would trigger her to buy other substances, including Lortab.
For two weeks, Melissa struggled to prevent withdrawal symptoms and cravings using only the handful of methadone pills she had left. That meant skipping some doses or taking half doses. Then while at work one day she received a phone call from her friend Kendall with good news. Kendall, a licensed practical nurse, had carefully described Melissa’s situation to her own supervisor, a psychiatrist, emphasizing Melissa’s need for methadone treatment for both pain and addiction. The psychiatrist casually responded that he would accept Melissa as a patient. Following the phone call, Melissa remembers going into the department of motor vehicles bathroom, getting into the fetal position, and crying tears of joy.
The psychiatrist later told Melissa that he would help her with her “pain,” but that given the pressure from insurance companies and his administrators, he could only do so for a year, just enough to let her comfortably taper off the medication. That is Melissa’s situation today. She is stable, she is comfortable, but she lives in fear, knowing that her next prescription might be her last. In the meantime, her city has approved the opening of a methadone clinic, but she has not heard any concrete plans. Every day she drives by the site on which it will supposedly be built, hoping to see construction workers. So far there are none. She worries that given the negativity in the local news media toward methadone clinics it might never open. But all she can do is remain hopeful.
METHADONE FOR ADDICTION treatment is arguably the most stringently regulated medication provided on an outpatient basis in the United States. It may only be administered and dispensed in opioid treatment programs (OTPs), also called methadone clinics. To dispense methadone, OTPs must be certified by the Substance Abuse and Mental Health Services Administration, accredited by a government-approved organization, registered with the Drug Enforcement Administration (DEA), and registered with the state in which they are located. While dispensing methadone, OTPs must follow a hodgepodge of federal and state regulations. For example, under federal law they can only dispense methadone to people with over one year of opioid addiction history unless the individual is pregnant, was recently incarcerated, or has previously been engaged in methadone treatment.168 Some states go further, requiring patients to have more than two years of opioid addiction history before beginning methadone treatment.169 These regulations do not apply to methadone used for pain management, despite the fact that methadone for addiction treatment is literally lifesaving—dramatically cutting the overdose death risk23—while the effectiveness of methadone for chronic pain management is largely inconclusive.170 In fact, methadone for addiction treatment is one of the most rigorously evaluated and best studied medications in the entire field of medicine.171
Under federal law, patients must attend the OTP daily, with only one take-home dose permitted weekly during the first ninety days of methadone treatment.168 At the end of one stable year, patients can obtain up to two weeks of take-home doses at a time.168 The maximum take-home amount, a one-month supply, does not occur until after two years of stable methadone treatment.168 These federal regulations create a floor on top of which states can add further restrictions. For example, Indiana permits a maximum of one week of take-home doses after one year of stabilization, unless the OTP petitions the government for an exemption for a particular patient.172
Even when patients have maximum take-home privileges, states can still subject them to random urine drug screens and bottle counts. Sherri, a young stay-at-home mother of three in North Carolina, has been stable for two years. She has full take-home privileges, meaning she can take home a month’s worth of methadone. Yet her clinic still calls her in weekly for random bottle counts and urine drug screens, a tedious process since she must drive with her young children to a clinic one hour away on short notice.
When I first began interviewing people in methadone treatment, I fully expected to hear uniform complaints about daily clinic attendance requirements. But the reality is a bit more nuanced. Many, though not all, believe that the structure and accountability of daily attendance was critical at the beginning of their recovery. Some feel that daily attendance forced them to schedule their day around treatment rather than the ups and downs of heroin highs, though for employed people or parents of young children, the inflexible structure can prove more of a liability. Others emphasized the accountability benefits of methadone clinics permitting take-home doses only after stability has been reached. For example, when I asked Eric, a former injection drug user, whether he disagrees with daily dosing requirements, he said, “No, I think it’s great. You got counseling and groups and it’s kind of making me have to be responsible if you want to keep your medicine and take it home with you eventually, so you don’t have to go every day.” Similarly, Michael, who is in recovery in the Southeast, said, “I know that there’s going to be consequences if I don’t get up every day and go to the methadone clinic . . . it’s a good thing for me right now. Not only that, but it keeps me accountable as well.”
Relatedly, some patients express a sense of pride when they reach the next take-home level. Clinic physicians, nurses, and counselors can capitalize on this by praising people for their hard work. However, sometimes the different take-home levels prompt patients to express scorn toward patients at lower levels. For example, Sherri says, “The people who’ve been there as long as me, if not longer, that still go every day, seven days a week . . . I feel like that’s kind of their fault; they’re not doing what they need to do.”
Daily dosing with take-homes permitted in a stepwise manner is based on a well-studied tool in addiction medicine: contingency management.173 Simply put, contingency management means giving a reward in response to a specific behavior.174 On its own, contingency management is usually insufficient for recovery. For example, it is ineffective to simply tell someone, “Each day that you don’t use heroin, I’ll give you twenty dollars.” Why? Because the contingency management alone is not addressing the person’s original reason for drug use, such as coping with childhood trauma, nor is it directly addressing physical cravings or withdrawal symptoms. But as a complement to treatment, contingency management can be an effective tool. For example, contingency management helps some people comply with treatment regimens, with the treatment then leading to stabilization. Essentially, daily methadone clinic attendance ensures consistent consumption of the medication, preventing physical highs and lows, enabling the individual to feel normal. When people feel physically stable, they can start to work on their underlying psychological problems.
But sometimes clinics create their own rules, not required by law, that prevent a patient who should be at a higher take-home level from ever reaching it. For example, some clinics prevent patients who use marijuana from ever advancing to the next level. Whether such a rule is appropriate is a contentious topic, both among patients and providers. For example, Jarrod had complete take-home privileges in Washington, but since moving to North Carolina a few years ago, he is still at level one because he continues to smoke marijuana. Likewise, Riley in the Midwest, believes he will never get take-home privileges at his clinic because of marijuana use: “It’s just easier for me to smoke a little marijuana than to shove other pills down my throat, which I don’t need. Why would I have to take antidepressants and antianxiety medication if I don’t have to?” He finds the marijuana restriction ridiculous given his significant progress in methadone treatment. He says, “I’m a completely different person, people trust me right now. You know, people will leave me with their kids and stuff right now, but if I wasn’t going to the methadone clinic, that would’ve never happened.”
Regardless of whether patients can advance to higher levels of take-home privileges, clinics should not kick patients out for misusing opioids, missing appointments, or for using other drugs. At a minimum, clinics should keep these patients on daily doses at the clinic. Decades of studies clearly demonstrate that a stable methadone dose is a strong predictor of methadone treatment retention, and methadone treatment retention is a strong predictor of positive health outcomes.120,175,176 When clinics fire patients, they virtually guarantee that former patients will resort to buying opioids on the street.176 As compared to high-barrier methadone clinics, low-barrier methadone clinics, meaning ones that accept people still misusing opioids, using other drugs, or engaging in criminal activity, have demonstrated efficacy in decreasing HIV/AIDS risk behavior, heroin use, mortality, and criminal behavior.176
Would it be possible to eliminate daily clinic visits altogether, perhaps only requiring daily clinics for brand-new patients while dosing needs are determined? In fact, other countries, such as the United Kingdom and France, have methadone treatment models significantly less stringent than our own. A potential benefit of our current system of daily methadone dosing and laxer buprenorphine prescribing is that we allow people to self-sort into the most appropriate treatment regimen for their needs. For example, people with long-term injection drug use or serious co-occurring conditions may benefit from the enhanced structure and accountability of daily methadone clinic attendance, while those with shorter addiction histories or no serious co-occurring conditions may find less stringent buprenorphine treatment sufficient. Furthermore, methadone has stronger activity at the opioid receptors, so methadone may better manage cravings and prevent withdrawal symptoms in people with more severe opioid addiction, especially injection drug users and those with a long opioid addiction history.12 And long-term drug users may have greater need of the ancillary services, structure, and accountability provided by methadone clinics.
Nevertheless, long-term daily clinic visits may be overkill for some clients. Sherri, like some interviewees, has mixed feelings about daily clinic visits, recognizing the accessibility problems they create. “You see people doing exactly everything you’re supposed to do and going to all of the meetings and clean drug screens every time. And you know, it does feel good to earn those [take-homes]. But it does become a little bit of a problem, because you do have to wait such a long time to start getting take-homes. It does interfere with everyday life. I know some people have lost their jobs because the line was too long or they were on hold for some reason, and I do see that as a problem, and they tried to kind of fix that where you have early dosing if you prove you have a job. But dosing is usually at five o’clock and unfortunately a lot of people have to be at work at five thirty or six. I do know a lot of people that have lost jobs because either they couldn’t [dose early] or they just were continually late.” Additionally, clients who move from one state to another, or even from one clinic to another clinic in the same city, are often forced to restart at level one.
When federal or state regulations are too rigid, physicians lack the ability to create flexible treatment plans. One could envision a different regulatory model wherein the providers at the methadone clinic, a team of physicians and counselors, make regular, individualized assessments of patients’ progress, on which they base take-home allowance, thereby potentially allowing monthlong take-home doses for some highly motivated, stable patients earlier than one year. Going a step further, one could envision a model wherein a stabilized patient can eventually switch to receiving methadone prescriptions outside of the methadone clinic, such as from a primary care physician and picking up the medication from a local pharmacy. This is similar to the model currently used in France successfully. In other words, one could envision a system that allows patients like Melissa to do exactly what Melissa does, except in an aboveboard, legal manner. After all, patients can already receive methadone for pain management from office-based providers. A US study exploring the potential transition of stabilized patients from methadone clinics to office-based primary care providers demonstrated high satisfaction among both patients and physicians.177 In the study, the transition also improved physicians’ perceptions of methadone treatment—supporting the argument that physicians’ misconceptions about methadone are partly due to methadone treatment’s separation from mainstream medicine.177
Such a flexible model would require significantly more clinic resources than are available today. Clinics would need to hire enough physicians and counselors to ensure regular, comprehensive patient progress evaluations on which flexible, evidence-based decision-making would be founded. But today so few addiction-trained physicians exist that such a model seems more theoretical than realistic. Significantly more physician training in addiction treatment in medical school and residency is needed, including more addiction medicine fellowships. Addiction medicine as a profession would need to be viewed more legitimately by fellow members of the medical profession178 and the public than it is today. After all, addiction medicine only recently became a physician subspecialty, certified by the American Board of Preventive Medicine.179
Too often MAT providers are viewed as enablers who are harming rather than helping patients. When such stigma is coupled with low insurance reimbursement rates and the location of methadone clinics in disreputable parts of town, it is no wonder that few physicians seek work in methadone clinics. A flexible model would also require legislators and regulators to trust methadone providers more, granting individual clinics and providers greater autonomy over treatment decision-making—the kind of autonomy we already grant physicians in other areas of medicine.
Even though many methadone clinic patients appreciate the structure and accountability available within methadone clinics, they do not paint an altogether rosy picture of their experiences. Instead, people whom I have interviewed identify two serious, widespread problems with methadone clinics: limited clinic accessibility and lack of person-centered care. These same problems have been mentioned in regard to rural and urban clinics, in blue states and red states. I believe these problems are primarily a result of methadone clinics’ stigma and separation from mainstream medicine, limiting health providers’ and administrators’ knowledge about and interest in opening new clinics. Few methadone clinics means limited competition between clinics, resulting in patients being stuck with whatever care they receive, even if it is provided without compassion and respect for patient preferences. Understandably, a patient already driving two hours daily to the nearest clinic won’t switch to a clinic four hours away, even if that clinic provides more person-centered care.
Between 2003 and 2015, the number of methadone clinics barely grew, despite an increase in the number of patients receiving methadone treatment at preexisting clinics.180 Most states have fewer than ten methadone clinics, with one state, Wyoming, lacking a single clinic.91 Methadone clinics are also more likely to exist in urban rather than rural areas. With such limited availability, daily clinic visits become infeasible for patients who must travel long distances, waking up at ungodly hours if they have any hope of maintaining employment.
Like Melissa, they describe daily two-hour drives to and from the methadone clinic, especially in rural areas where public transportation is largely unavailable. Many people drive long distances to methadone clinics without drivers’ licenses, which they have lost due to drug-related criminal charges. Methadone clinic patients so frequently lack drivers’ licenses that several interviewees have described police waiting outside their clinics, eager to pull drivers over to ask for their IDs. Not willing to risk getting caught driving without a license, others rely on family members or friends to transport them daily. Mary Beth, who lives in Indiana, describes waking up daily at 4:00 a.m. to drive her twenty-one-year-old son an hour each way to the methadone clinic before beginning her work for an insurance company. She repeats this routine rain or shine, weekday or weekend, because her son’s probation terms prohibit motor vehicle operation, and no reliable public transportation exists in their area. She does not remember the last day she slept in.
Person-centered care is also rarely experienced in methadone clinics. Perhaps except for within the Veterans Health Administration, methadone clinic patients do not describe feeling like they are attending a medical facility, especially when forced to wait in long, winding lines with receptionists and nurses behind bulletproof glass counting piles of cash. Vanishing counselors and limited counselor choice further deprive patients of the feeling that they are just that—patients—rather than “junkies” undeserving of quality care.
Eric explained how suddenly losing a counselor with whom you have established a therapeutic relationship can be extremely difficult: “I know people where they lost a counselor and it triggered them. They used again. I wish the [methadone clinics] paid their counselors better or made it a better work environment where the counselors will want to stay.” Describing the limited counseling accessibility in her methadone clinic, Christina, who lives in the Southeast, said, “If you want to get clean, you can, but you have to try really hard because it almost feels like it’s kind of rigged against you. Like everything you [get] is not quite the right help that you need, and you just kind of have to focus on yourself and say you want this enough.”
The combination of counselors’ inadequate MAT education and their own recovery through twelve-step programs can also create a fertile breeding ground for misconceptions about MAT efficacy. Not surprisingly, few addiction counselors are eager to work in methadone clinics. Nevertheless, methadone clinic patients often describe individual counseling as very beneficial to their recovery, especially if they have a history of trauma.
Despite its efficacy, and almost fifty years after its introduction in the United States, methadone treatment is still publicly stigmatized. Clinic locations hardly help. Brooke, who is in recovery, says, “They’re always just kind of nasty places to go to on the bad side of town. It’s in an undesirable location and it makes you feel like an undesirable to be there.” Often located in crime-ridden areas, methadone clinics are an easy target for blame if any crime occurs. Yet, methadone treatment has been repeatedly associated with decreasing criminal activity.23,181
I routinely ask people in recovery how they would characterize methadone clinic patients, and I have received a fascinating divide in responses. Current or former methadone clinic patients usually believe that most people go to methadone clinics for the “right” reasons—to stop opioid misuse or at least to stop feeling sick, meaning to stop withdrawal symptoms. The latter should not be dismissed as an illegitimate reason for methadone treatment: not feeling sick can jump-start a desire for complete recovery, something difficult to think about amid strong cravings and withdrawal symptoms.
In contrast, people in recovery who have never participated in methadone treatment frequently view it negatively. Describing antimethadone stigma in her community, Sherri says, “In every single [counseling] group I’ve ever been to [at the methadone clinic], at least one person brings it up, saying, ‘My boyfriend doesn’t understand why I’m here and I don’t know why I can’t dose out faster.’ It’s very misunderstood by everybody, and you can see how much people are affected by [stigma], especially when a significant other doesn’t understand about it. My boyfriend, when I first got with him a year ago, I was straight up honest with him, I said, ‘I’m a recovering heroin addict. I go to the methadone clinic.’ I took him with me and he went to a couple of my counseling sessions. . . . That really helped him understand what was going on and [now] he’s super supportive of me.”
Even some buprenorphine treatment patients look down on methadone clinic patients. One methadone clinic patient points to the following reasons for the discrepancy: the word “buprenorphine” sounds more medical than “methadone,” which incidentally sounds like “meth,” as in crystal meth, and buprenorphine is provided by regular office-based physicians, often in nice parts of town, rather than methadone clinics in seedy areas. Furthermore, some interviewees point to the inability to feel heroin if taken during buprenorphine treatment, while claiming that you might still feel heroin if used during methadone treatment when the methadone dose is too low.
Interviewees with methadone treatment experience argue that an appropriate methadone dose is critical to treatment success. Yet over 40 percent of US methadone clinic patients receive too low a dosage, with nonwhite minorities particularly likely to receive insufficient doses.182 Significant evidence exists that methadone treatment programs should provide a minimum dose of 80 mg/day, as methadone dose is strongly related to treatment effectiveness.183–185 Not only do higher methadone doses better prevent cravings, but the higher the methadone dose, the less likely the individual is to feel the effects of other opioids, such as heroin.186 For example, a small double-blind study found that people cannot distinguish heroin from a placebo if they have an appropriate dose of methadone in their system.186 Christina told me, “There was one time in the first year [of methadone treatment] when after the first week, I slipped up and went and bought some heroin and I didn’t feel a damn thing. I was so mad. I was like, wow, I let myself relapse for nothing.” I asked if someone could feel heroin despite undergoing methadone treatment, and she said, “If you’re dosing pretty low, I think maybe, yeah, you can still feel it, but not nearly as strong as you could when you aren’t taking methadone.”
Low methadone doses are not evidence-based; instead, they are likely a reflection of some clinic owners’ or providers’ anti–harm reduction attitudes.182 Like Christina, Blaine explained that during the first few days of methadone treatment he continued to use heroin, because the clinic started him on the low dose of 20 mg/day, despite many years of heroin use and his high tolerance for opioids. Not surprisingly, he still had cravings. It wasn’t until the clinic increased his dose sufficiently that he stopped using heroin. I asked how he feels about methadone clinics starting people on very low doses. He responded, “With ‘go low and go slow’ it’s taken way too many people too long to get comfortable. So, of course, if I’m not comfortable, what am I going to do? I’m going to do what I always know makes me feel better and I’m going to get high.”
After months of methadone treatment, Blaine feels normal, with no cravings for heroin and no euphoria from methadone. Interestingly, he claims that those who feel euphoria from methadone either have a very low tolerance, and possibly shouldn’t be undergoing methadone treatment to begin with, or else they are taking very high doses of methadone purchased off of the street. The vast majority of methadone sold on the street, and methadone-related overdose deaths,187 consist of pain management prescriptions diverted to the black market. Methadone prescriptions for pain management are in pill form rather than liquid form and are provided at a different dosage and frequency than in methadone clinics. Bryan, another interviewee, admitted that when he first started methadone treatment for addiction, prior to fully committing to recovery, he considered selling some of his daily doses. But after racking his brains, he could not formulate a way to get the daily doses out of the clinic, saying, “Believe me, if there was a way to game the system, I would have figured it out.”
Methadone diversion is also very misunderstood. Studies suggest a wide range of reasons why people illicitly buy and sell methadone. For example, some people sell part of their own methadone to supplement their low incomes or to afford the cash necessary to pay cash-only methadone clinics. Some provide friends or relatives with methadone to prevent withdrawal symptoms as an altruistic gesture, especially if friends or relatives cannot access a clinic.181,188–190 Patients may buy street methadone to supplement too low doses from their clinic or simply because they cannot access the clinic due to financial or transportation reasons.181,188–190 In other words, the reasons for methadone street sales can be far more complex than the stereotype of nefarious drug dealers helping users get high. In light of methadone treatment’s clear, well-studied benefits, legal restrictions to prevent diversion or misuse should be balanced in favor of helping people access lifesaving treatment.
The lack of person-centered care, high patient-provider ratios, and publicly visible lines of often shabbily dressed people persuade the public that methadone is a bad treatment—even though it’s really the provision of methadone rather than the medication itself that is so problematic. It is, therefore, unsurprising that politicians can be vehemently anti–methadone treatment. But even the most antimethadone politician might change his or her mind if made aware of methadone treatment’s fiscal benefits. Both methadone and buprenorphine are cost-effective,23,191,192 saving taxpayer money on health care services, social services, and law enforcement. Interestingly, researchers believe that methadone expansion is even more cost-effective than buprenorphine expansion, but methadone treatment is less likely to expand quickly given the strict regulatory environment in which methadone clinics operate, one in which opening a new clinic or even keeping an existing clinic open can feel like a minefield.191 For example, one medical director of a Florida methadone clinic described having to appear before local lawmakers annually to argue the case for keeping his clinic open. The arguments always feel like an uphill battle, despite the number of patients the clinic is helping.
EVEN THOUGH METHADONE, and increasingly buprenorphine, is the medical standard of care for treating pregnant women with opioid addiction,23 many medical professionals and the public lack this knowledge. Sherri, the stay-at-home mother of three, recently formed a Facebook-based support group for mothers undergoing methadone treatment. Her personal experience prompted her to do so.
She had been undergoing methadone treatment for about three years when she became pregnant with her first child, Rose. Encouraged by her ob-gyn to stop methadone treatment because it might increase the baby’s risk of being born with neonatal abstinence syndrome, Sherri quit cold turkey. Her ob-gyn was proud. But while experiencing methadone withdrawal symptoms, Sherri miscarried and lost her baby. She was so depressed that she returned to heroin use. For a time, it made her feel emotionally numb, exactly what she wanted, but soon her life started spiraling out of control. When her husband threatened to leave her, she restarted treatment at the methadone clinic. Sherri considers the four-month gap between quitting and restarting methadone the worst time of her life. Not only did she lose her baby, she feels she lost years of progress in recovery. In tears, she explained that her ob-gyn wasn’t the only one who pressured her to quit methadone treatment; her mother and sister did too, saying that only a terrible mother would continue methadone treatment while pregnant. Sherri’s experience reflects widespread misconceptions about methadone treatment during pregnancy.
Babies born to mothers undergoing methadone treatment will not necessarily have neonatal abstinence syndrome, a condition in which the baby experiences painful withdrawals from the opioid, much the same way an adult does upon quitting opioids.181 Furthermore, babies born to mothers undergoing methadone treatment have comparable developmental outcomes to babies in control groups.23 The treatment for neonatal abstinence syndrome is actually very low doses of methadone or morphine provided in the neonatal intensive care unit.193 Videos of babies with neonatal abstinence syndrome are heartbreaking; the babies’ muscles have uncontrollable spasms as they scream in pain. But while the public fears mothers taking methadone, what they really should fear is mothers quitting methadone as medically prescribed and relapsing to oxycodone, heroin, or fentanyl misuse, virtually guaranteeing not only neonatal abstinence syndrome but a particularly severe form of the condition.120
Importantly, methadone helps stabilize the lifestyle of the woman, and therefore the home of the forthcoming child. Untreated or ineffectively treated opioid misuse in pregnant women increases the risk of unstable housing, financial hardship, physical abuse, lack of prenatal care, and communicable disease acquisition, all of which can harm the child.194 In contrast, methadone treatment of the pregnant woman significantly improves maternal, fetal, and neonatal outcomes in comparison with nonpharmacological treatment only.195
When Sherri became pregnant with her next child, Autumn, she decided to continue methadone treatment, closely monitored by a different ob-gyn in collaboration with her methadone clinic physician. When Autumn was born, she had no neonatal abstinence symptoms and went home after a few days in the hospital. Sherri’s ob-gyn also encouraged her to breastfeed, something that is safe to do while a mother is undergoing methadone treatment.194
MANY PEOPLE WHO BEGIN methadone treatment have no desire to stop, especially if it has helped them stabilize an otherwise chaotic life. They stay at a stable dose for years. Others desire only short-term methadone treatment and slowly taper off the medication after achieving stability. Among people who taper off methadone, some eventually decide to switch to buprenorphine treatment, thereby necessitating a manhunt for the nearest buprenorphine treatment provider who is sometimes only slightly easier to find than a methadone clinic.
Patients who switch to buprenorphine must undergo partial detoxification, a difficult process in which they will experience withdrawal symptoms for a few days, though not nearly as many days of withdrawal symptoms as switching to extended-release naltrexone. When I ask methadone clinic patients whether they have considered switching to buprenorphine given the less stringent regulations on buprenorphine, the most common response I get is fear of withdrawal symptoms associated with the detoxification process. Eric says, “You’ve got to come off [methadone] completely. It’d be like two, three days I think before we can start Suboxone. I’m not in the right mind-set yet, it scares the crap out of me.” Without palliative care for painful withdrawal symptoms, patients are at risk of relapse.
Palliative care could theoretically be inpatient, though this rarely occurs given that insurance almost never covers inpatient medical management of opioid withdrawal symptoms. Palliative care could also be outpatient, something insurance is more likely to cover. Methadone clinics have the infrastructure to provide this outpatient care. But while methadone clinics are adept at tapering people down to the minimum methadone dose, they often neglect to help people make the complete transition to buprenorphine or extended-release naltrexone, especially when clinics don’t offer buprenorphine or extended-release naltrexone treatment. In a recent report, the Substance Abuse and Mental Health Services Administration stated that few opioid treatment programs supervise a complete methadone withdrawal process, partially due to fears that individuals will relapse, with relapse leading to overdose.196 But without such supervision, methadone clinic patients have difficulty switching to other forms of MAT if they choose to do so. Even though the Substance Abuse and Mental Health Services Administration urges OTPs to offer all forms of MAT,196 in 2015 only slightly more than half offered buprenorphine and less than a quarter offered extended-release naltrexone, demonstrating not only the level of separation between mainstream medicine and OTPs but also between the treatment tools available.180 As a result, people wishing to switch medications are usually in the unenviable position of managing their own withdrawal symptoms. Realizing that she might relapse during the withdrawal process, one woman described asking her family to lock her in the basement, thereby preventing her from seeking heroin on the street that could immediately ease withdrawal symptoms during her transition to buprenorphine.
SYSTEMATIC REVIEWS of decades of rigorous randomized controlled trials,92,101 including multisite longitudinal studies from multiple continents,197 leave no doubt that methadone is more effective than nonpharmacological treatments alone, such as counseling, at decreasing opioid misuse, opioid overdose rates, criminal activity, and HIV/AIDS risk behaviors, such as drug injection.23 Methadone is the most comprehensively and rigorously studied form of addiction treatment with the largest evidence base.23 Like buprenorphine, methadone for addiction treatment is listed by the World Health Organization as an “essential medicine,” meaning it should be widely available across all nations given its significant health benefits.198 Nevertheless, people in recovery and their families, politicians, health care providers, and the public are often either adamantly against methadone or on the fence about its effectiveness. Widespread myths about the medication coupled with poor services make the stigma difficult to overcome.
Myths associated with the medication circulate within recovery communities, including among people participating in other forms of MAT. One of the most common myths is that methadone “gets in your bones.” Another one is that it “rots your teeth.” But as multiple physicians have explained to me, people in active drug use often don’t take good care of their teeth, sometimes for decades. In fact, one addictionologist said the first physical trait he notices during new patient appointments is teeth, as teeth can indicate drug use severity. Once patients are stabilized on methadone, they sometimes visit a dentist for the first time in years, maybe in their entire lives, where they discover tooth decay, which they then mistakenly attribute to methadone rather than long-term poor hygiene.
Another myth is that the medication turns people into “zombies,” causing them to nod off throughout the day, rendering them unable to focus on tasks or operate motor vehicles. While it is true that inappropriately high doses of methadone could make someone nod off, an individual undergoing methadone treatment at an appropriate dose with adequate monitoring will act and feel normal. Of course, if an opioid-naïve person or an intermittent opioid user with relatively low tolerance starts methadone treatment, then they will likely feel euphoria or nod off given their lack of tolerance. But under federal law, methadone clinics can only treat people with one or more years of opioid use disorder—a point at which low tolerance is very unlikely. For people with less than a year of opioid use disorder, buprenorphine or extended-release naltrexone are great treatment options—that is, if they can find a physician prescribing those medications.