Patients and other individuals who are advocates are a growing force in medication-assisted treatment (MAT) for opioid dependence, providing information and support to patients as well as assistance to opioid treatment programs (OTPs). Advocates also are an essential link between patients and OTPs. They are not as well known as they should be, there aren’t enough of them, and they are in dire need of funding.
In January, Zac Talbott, a patient who is the director of the Tennessee Statewide and Northwestern Georgia chapter of the National Alliance for Medication Assisted Recovery (NAMA Recovery), shared his experiences with addiction, treatment, recovery, and patient advocacy with AT Forum.
Getting Started in Advocacy: The CMA
Patients and others who want to be advocates need to first have a good knowledge of advocacy and the various issues surrounding MAT. Taking the CMA (Certified Medication Assisted Treatment Advocate) course and obtaining certification gives both patients and health care professionals the basic grounding for advocacy. Certification is essential to being a credible advocate. “There are patients out there who often are well-meaning, who claim to be advocates, but who can do harm,” he said. “A lot of folks without training do not realize that advocates have a code of ethics, and one of the main ethical guidelines is confidentiality. It goes to the heart of our professional credibility. There has never once been a case of a patient’s confidentiality being violated by a CMA working with NAMA-R.”
The second crucial skill that CMAs have is knowing how to communicate with OTPs on behalf of a patient. “You can make things worse for the patient you’re trying to help if you come off like an attack dog. Patients and OTPs agree on more than 90 percent of the issues, and that should always remain the primary focus. It’s also important to remember that the job of a patient advocate is to advocate for what the patient wants. We can’t take off and start a crusade without that patient wanting us to,” he said.
NAMA-R developed the CMA training course with no funding, which was a tremendous challenge. However, the course has been strongly supported by the American Association for the Treatment of Opioid Dependence (AATOD), and the federal Center for Substance Abuse Treatment (CSAT).
Volunteering and Funding
Some NAMA-R chapters could do significantly more if their expenses were paid. Members are committed people who largely volunteer their time and give of themselves without any compensation.
NAMA Recovery chapters do need funding. NAMA-R is a 501c3 non-profit organization, so donations are tax-deductible. All other industrialized countries fund organizations like NAMA-R, said Mr. Talbott. “The United States is the exception. This leaves NAMA-R dependent on donations from patients, for-profit OTPs, and the pharmaceutical industry.”
In Tennessee—and in many other states—Medicaid won’t currently pay for MAT with methadone. “It’s all cash down here,” he said. The fee for patients is $300 to $400 a month—frequently all the money a patient has.
Mr. Talbott hopes NAMA Recovery can partner with OTPs for funding and support. “We had a wonderful meeting with Chief Operating Officer Jerry Rhodes and the regional managers of CRC Health Group during the AATOD Conference in Philadelphia this past November,” he said. “They recognize that advocacy is extremely important.”
Insurance and the ACA
Whether the Affordable Care Act (ACA) will help fund MAT is still unclear, said Mr. Talbott. “It’s supposed to, but insurance companies are good at finding loopholes.” Implementation and enforcement are still problematic.
In Tennessee, for example, the state is making it impossible for new OTPs to open, which means that facilities are opening up across the state border. “Programs in other states are treating the patients that Tennessee isn’t,” said Mr. Talbott. If Tennessee Medicaid were to say that patients had to be treated in a Tennessee facility, that might make it more attractive for programs to open in Tennessee.
Even though his organization is in Tennessee, most of Mr. Talbott’s calls come from outside the state—just because there are so many patients, especially in nearby southern states, who need help. NAMA-R has always had difficulty recruiting individuals willing to make a commitment to advocacy and start a chapter. Stigma, prejudice, and just plain fear have been barriers in southeastern states.
From Pain Medication to Heroin
Mr. Talbott’s addiction started—as with many people—with a prescription for hydrocodone for a chronic painful condition. Most people feel sick when they take opioids, but Mr. Talbott is part of the 10 percent of the population that is susceptible to addiction. “I loved them,” he said of opioids. His addiction sent him to buying pills from a pill mill and eventually to the street, where he also bought heroin. “This was in the late 90s,” he recalled. “Within eight years I went from a couple of prescribed hydrocodone a day to 25 prescribed 30-milligram doses of oxycodone.” He became an intravenous drug user within four years of initially starting the pills.
“The opposite of the stereotypical drug user,” Mr. Talbott had two college degrees when he first became addicted to opioids, and came from a well-known and well-respected family—“church folks,” he explained.
Then, there was treatment. “I went for all the wrong reasons—I didn’t go because I was seeking recovery,” Mr. Talbott said of his treatment in an OTP. “People who are drug users think that there’s no withdrawal, and that you might even get a little buzz.” But six months after entering the OTP and starting methadone, he found that he was in recovery—by accident. “I had no craving. I stopped using the needle. I was thinking about my life again—by accident. The person I was prior to the addiction quickly started to re-emerge. That’s the beauty of methadone.”
After that, it took Mr. Talbott a year to focus on recovery and life. “There’s so much you need to do, straightening out your credit, fixing everything you did when that disease is active.” When his addiction was at its height, he was in the middle of his masters’ in clinical social work. Ultimately, the addiction took over and he left the program. But even before his addiction, he had always wanted to be in a helping profession—a mental health counselor, an Episcopal priest, or a lawyer. “I wanted to help people,” he said. “Once I was in recovery, that part of me came back quickly.”
He found NAMA Recovery because his counselor recommended it as an alternative to driving to the clinic for four group meetings during his induction period in treatment. “I had to drive more than two hours one way to the OTP because I was so rural. So my counselor said to go to the website—methadone.org—print out, read, and bring in one of the Education Series to discuss ‘and that will count as one of your groups.’” Ultimately, he wrote to the NAMA-R chapter coordinator and said a NAMA Recovery chapter was needed in Tennessee.
NAMA Recovery’s main goal is advocacy, and that is where Mr.Talbott saw his life heading. “It’s a natural fit,” he said. “To be a MAT advocate is to advocate for the patient in treatment, but we’re not patient advocates only or specifically. ‘The patient comes first,’ as Rokki [Roxanne Baker, NAMA-R president] often says.”
Partnership With OTPs
Patient advocates can have a lot of power, not only on behalf of patients, but on behalf of providers. When onerous restrictions are imposed by states, especially states that don’t have an AATOD chapter, providers call NAMA Recovery. “We are more than just patient advocates, we are MAT advocates,” said Mr. Talbott. “We advocate for the entire modality.”
About a third of the calls he gets—Tennessee joined AATOD just last fall—are from OTPs, said Mr. Talbott. “Sometimes patients and providers don’t have the best relationship. Some OTPs view advocates as whistleblowers and troublemakers, and sometimes the OTPs get defensive as soon as advocates call them. Several of us are trying to stress to OTPs and patients that we’re all on the same team.”
Technically, the provider advocacy organization is AATOD. But when there is an issue that draws both patient and provider complaints, Mr. Talbott reaches out to consult with AATOD president Mark Parrino or the state chapter of AATOD. “We can strategize together,” he said. Sometimes the approach involves filing a complaint with the Department of Justice or SAMHSA’s CSAT, which regulates OTPs. Often, OTPs haven’t even heard of NAMA Recovery, and sometimes haven’t heard of AATOD either, he said.
“The way to go is moving away from patient advocacy specifically and toward MAT advocacy as a modality,” said Mr. Talbott. And patients who are certified advocates can be of immense help to OTPs, whether they are testifying before the legislature or making a complaint to the Department of Justice. Patients and providers aren’t always going to agree, but ultimately they’re fighting the same battles and striving for the same goals.