To infuse discussions pertaining to potential policy changes with a better understanding of the needs of individuals with lived experience, the workshop opened with three individuals’ personal journeys and their reflections on the benefits of methadone treatment, challenges they have encountered related to the provision and access to treatment, and considerations on how best to move forward. It is important to recognize that the experiences of individuals who take methadone for OUD are as varied and diverse as the people themselves; these three perspectives are meant to illustrate personal experiences but cannot fully represent the broad array of experiences or people who have been affected by the current regulatory and legal landscape regulating to how methadone is dispensed and administered.
SUSTAINED RECOVERY MAY REQUIRE CONTINUED METHADONE TREATMENT
Walter Ginter, project director of the Medication-Assisted Recovery Support (MARSTM) Project, introduced himself as a person in sustained methadone-assisted recovery from heroin. In 1972, after only 2 years serving in the U.S. Army, Ginter was discharged for being a heroin user. In 1977, he began methadone treatment for the first time.
Shortly after beginning treatment, Ginter stopped using heroin, got married, and had a good job. “I could have been a poster child for methadone treatment,” he said. When a new job opportunity became available, his boss told him, “First, I want you to get off that ‘junkie drug,’1 methadone.”
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1 As noted in Chapter 1, in some instances throughout this proceedings, the rapporteurs deviated from currently accepted terms when necessary to capture the language used by a speaker when they selected it to make a certain point about the stigma they faced.
Ginter successfully completed a 30-day detox program, but had a recurrence of heroin use just 3 days later.
Ginter started methadone treatment again, and “after a few years, again [he] was doing very well.” He and his wife had started a business and were doing well. A counselor in the program suggested he might want to taper off methadone, but he relapsed again when he got to about 5 milligrams. This pattern repeated itself over the next 20 years as Ginter went in and out of at least eight methadone programs.
“I finally realized there must be more to this treatment than just the medication,” he said. A psychologist assigned to him by the Fairfield County, CT, Alcohol and Drug Prevention Council offered him the opportunity to beat up a 6-foot teddy bear with a baseball bat. “I tried to explain to her that I had addiction issues, not anger issues, but she didn’t seem to understand the difference,” said Ginter. This experience taught him several valuable lessons: First, being smart and financially stable did not lead to successful recovery, but, equally as important, the supports provided need to be specifically designed for methadone patients.
Ginter began to believe that his inability to get off methadone reflected some sort of innate weakness. Then, a website he created for methadone patients came to the attention of Joyce Woods, who was then president of the National Alliance on Medication Assisted Recovery (NAMA Recovery). Woods explained to Ginter that he had a chronic brain disorder. Ginter said it was the first time in 20 years of treatment that anyone told him opioid addiction was not due to bad behavior but to a brain disorder. “She said, ‘You may be on methadone for the rest of your life, but what difference does it make? Your life is everything you want it to be.’” Ginter started working with NAMA Recovery as an advocate with the goal of sharing this revelation with others. With colleagues, he wrote and received funding for a grant from the Substance Abuse and Mental Health Services Administration (SAMHSA) to establish the MARS Project,2 the first project ever funded to provide recovery support services for people on methadone. At the Albert Einstein College of Medicine, he started training others about implementing medication and recovery services and was awarded another SAMHSA grant to establish the MARS Training Institute. Since then, Ginter said he has done training in 31 states and made 5 trips to Vietnam, which now offers MARS services nationwide.
The saying “timing is everything” held true for Ginter, who notes that if he were trying to set up a program in another country or even go to another state to train today, his methadone maintenance program would require him to seek approval to leave the state. “You can’t understand how
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2 For more information about the MARSTM Project, go to https://marsproject.org (accessed May 5, 2022).
demeaning it is for someone on medical maintenance for 21 years to suddenly be treated just like a junkie,” he said. “If I was on buprenorphine and could see a private doctor under similar terms as medical maintenance, it would be a much better situation.”
RECOVERY MAY TAKE MANY FORMS
In recovery for nearly 30 years, Brenda Davis works as a patient advocate with NAMA Recovery. Like Ginter and many others, recovery was a process. It started when, under the influence of pills and heroin, she had a massive seizure in front of her young daughter. Only a few weeks earlier, her little girl had watched as Davis and a friend were up for days using drugs. Davis finally fell asleep, waking up around 24 hours later to a baby banging her in the head with a bottle because she was hungry. “She’d cried so long that she just didn’t have any more tears,” said Davis. “Although I felt bad about it, I couldn’t stop at the time. But the seizure was the one thing that changed my life. I saw the hurt in my baby’s face and knew that was my bottom.”
Davis entered a methadone treatment program that provided her the structure and support she needed. At first, she said she wasn’t ready to be in control of her own medication. “My first thought was that if I got weekend bottles, I could split one to get myself through the weekend and sell the other,” she recalled. “If I didn’t have the structure of the program, I don’t think the outcome would have been the same.”
Eventually, Davis said she was able to “literally, emotionally, and psychologically move forward” and became solid in her recovery. She started a career in treatment, became manager of a clinic, and then took on a patient advocacy role in a large hospital. She got her bachelor’s degree and went on to earn a master’s degree in social work. After working in the opioid treatment field for more than 25 years, she said she believes she has found her true calling.
Part of her job, she said, is to “help patients understand the true meaning of recovery,” and to imbue in patients the conviction that they should be treated with dignity and respect. “I look through the lens of a patient, but also a woman of color,” she said. “I know what it’s like to not be treated as a person, and I understand the struggles we continue to face in medication-assisted treatment due to stigma and prejudice.”
Davis is also a strong advocate for patients having access to practitioners who understand OUD and are trained in methadone pharmacology. “History has shown us what happens when untrained practitioners prescribe methadone. The ultimate patient harm, death, often occurs,”
she said. At the same time, patients require access to trained professionals who understand the differing needs of patients at different stages of their recovery. Indeed, she said, data show that integrated care offered through opioid treatment programs (OTPs) results in positive long-term outcomes for many patients. However, stable patients who no longer need or want counseling, case management, and other wraparound services deserve the option of moving to office-based methadone treatment and/or new models of pharmacy-based prescribing.
She added that the complex biopsychosocial3 nature of OUD means that treatment requires more than access to medication. Methadone does not treat trauma, hepatitis C, or HIV, she said. “Patients deserve to have comprehensive services, but we also deserve not to be forced into boxes that we do not need or want.”
This point is explored further in Chapter 10 in terms of redefining “success” in methadone treatment to include non-abstinence-based recovery.
THE NEED FOR A PATIENT-CENTERED FOCUS
Abby Coulter introduced herself as “a photographer, a parent, a daughter, a friend, an activist, and a person on methadone.” She is also a coauthor of the Methadone Manifesto,4 a document that outlines many policy issues related to methadone treatment and proposes a vision for change from the lens of people with lived experience. Her journey began nearly 20 years ago when she walked into a methadone clinic as a pregnant woman on drugs. The clinic system that existed at that time was welcoming, helpful, and patient centered, said Coulter, in stark contrast to what exists today.
Coulter came to understand that she was a person who needs to take an opioid agonist to feel well. She spent the next 19 years trying to navigate a system that, she said, “has increasingly failed to focus on evidence-based, patient-centered care.” Then, despite 20 years of being a successful, compliant methadone patient, she had a positive screen for an opioid and lost everything. Denied access to take-home medication, she was forced to go into the clinic for daily dosing and start inpatient counseling. “The idea that all of the work I had put in was stripped away in the blink of an eye, without a single thought of how that was going to affect everything I had
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3 Biopsychosocial is defined as “relating to, or concerned with the biological, psychological, and social aspects in contrast to the strictly biomedical aspects of disease” according to the Merriam-Webster Dictionary; https://www.merriam-webster.com/medical/biopsychosocial (accessed June 8, 2022).
4 To learn more about the Methadone Manifesto, go to https://sway.office.com/UjvQx4ZNnXAYxhe7?ref=Link (accessed May 9, 2022).
worked for, was a terrible feeling,” she said. The clinic system and methadone maintenance should not get in the way of progress, said Coulter, yet that was exactly what happened to her.
“We have to do better,” said Coulter. She advocated for access to methadone beyond the clinic walls and alignment of federal and state regulations. She did note that during the COVID-19 pandemic, SAMHSA modified some regulations. “It took a pandemic, an overdose crisis of epic tragic loss, and a failed war on drugs to recognize that what has existed for far too long isn’t working anymore.”
