People taking medication to treat opioid addiction face stigma that they're not 'fully recovered'

Michele Donato, 50, began using drugs and alcohol in her teens. Eventually she turned to heroin, a habit she could not kick even after 19 stints in rehab.

Eighteen months ago, she completed her 20th try. Ever since, she has maintained her recovery, which includes daily doses of methadone.

She would like her recovery to include 12-step support groups. But that has been a struggle for Donato, who lives in the Frankford section of Philadelphia.

"I celebrated my year [of sobriety] on Oct. 13, 2017, and people were talking really bad about me, saying 'She's horrible,'" Donato recalled about her experience at a 12-step meeting. "People were calling me 'Methadone Michele.'"

David Barclay, medical director of Prevention Point Philadelphia, hears this bias against medication-assisted treatment, or MAT, from his own patients, even though he puts them on Suboxone to help maintain their sobriety.

He says he has patients who believe they aren't "clean" because they're on MAT – even though this is the type of treatment with the strongest track record of success, numerous medical studies have established.

>> READ MORE: Opioid addiction treatment with medicine works best. Why don't more young people get it?

The problem: Some people still can't accept the idea of using drugs to get off drugs, even though recovery medicines used as directed do not help patients get high. Rather, they ease symptoms such as cravings.

Fed up with the stigma against MAT, Megan McAllister, a certified recovery specialist at Prevention Point, recently started a 12-step meeting for people on methadone, buprenorphine or naltrexone, the three primary drugs prescribed for opioid recovery.

"The whole thing with 12 steps is, the desire to stop using is the only requirement," said McAllister, who is in recovery for opioid use disorder. "And so who is anyone to judge us just because we're on a medication? We have every right to do our recovery whichever way we want to, and if going to 12-step meetings helps, then so be it."

"There is widespread myth and misunderstanding about these medications, and I think it's coming from a place where there are still influential people who create this narrative that being on a medication is switching one drug for another," said Michael Botticelli, executive director of the Grayken Center for Addiction Medicine at Boston Medical Center.

"There are no judgmental attitudes around using nicotine replacement therapies" to quit smoking, noted Botticelli, who led the Office of National Drug Control Policy during the Obama administration. "So why do we still cling to this ideological belief that, despite all the evidence, putting people on a prescribed medication is not fully recovery" from opioid use disorder?

Though Narcotics Anonymous' official stance is that abstinence is the only way out of addiction, research shows that MAT works best in conjunction with psychosocial interventions, such as support groups. But 12-step groups without MAT do not have as strong a track record.

Half of opioid users on MAT are still in recovery after six months, compared with a relapse rate of 80 percent to 90 percent within just 30 days of detox for those without medication.

"Shifting the culture of peer-recovery groups to support the use of medications may have implications for improving treatment retention and should be considered as a potential strategy to reduce the burden of the opioid epidemic," reads a paper from Johns Hopkins University public health researchers recently accepted for publication in the journal Substance Abuse.

The women in Philly MARA (Medication Assisted Recovery Anonymous), the 12-step group McAllister recently started, say they are living proof of what researchers are discovering.

On a recent Wednesday night, Donato was among the 24 women meeting at St. Marks Church in Frankford to share their struggles and their stories.

Jane Smedley was there. After starting with a pill habit in her mid-30s, Smedley said she went "nuts with heroin" after her husband died.

"I never thought I would wake up not being dope sick or sticking a needle into my arm," said Smedley, 57. "For years, I had every reason known to man not to get on methadone: It makes you fat. It gets in your bones. Oh, I don't want to go to the clinic every day. But I didn't have a problem going to the K&A and getting a bag," she said of the heroin market at Kensington and Allegheny.

After an arrest at 56 for possession, a drug court judge sent Smedley to a methadone program. But Smedley was afraid to tell anyone in the 12-step meetings she attended that she was on medication.

"They're telling me I was blocked from God. I wasn't clean. I'm still reluctant to tell anyone in the rooms," she said, using the term 12-steppers use for their meetings.

At the MARA meeting, she can share that methadone saved her life.

>>The Opioid Forum: Join us May 17 for a forum discussion on the current state of the opioid crisis in Philadelphia. Speakers include Inquirer opioids reporter Aubrey Whelan, Columnist Mike Newall, Health Editor Charlotte Sutton and Mayor Jim Kenney.

"I can say whatever I want," Smedley said. "I don't have to worry about anything. It becomes a big issue when you can't mention [MAT]."

Jolynn Twilley agreed. The first time she ever talked about methadone was at the Philly MARA meeting. "People are entitled to their opinion, but it's saving my life," Twilley said about methadone.

Sabrina Schwager, 32, has gone from being homeless to having two jobs and living in a recovery house in Frankford.

"Methadone is stopping me from putting a needle in my body," she said. "It doesn't get you high. It stops the cravings, and even if you do use you're not going to be able to feel it so it's a waste of money." (Someone on methadone likely won't feel the effects of a single dose of heroin; but multiple doses could lead to a fatal overdose, one reason the drugs should never be combined.)

For all the members' success, though, a problem remains: finding sponsors, people in long-term recovery who can mentor others, a key ingredient in 12-step groups.

"It's frustrating because I'm someone who's doing well in recovery, but I should have someone with me in that journey," said McAllister. Without a sponsor herself, however, she doesn't believe that she can sponsor others, though several women have asked.

Historically, Americans have viewed and treated substance use disorders as moral failings and criminal issues. Thinking of addiction as a medical condition is a relatively new idea.

"For 50 years the response to people with addiction was to incarcerate them, and we still do that," said Yngvild Olsen, secretary for the American Society of Addiction Medicine. "So the idea that this is now a disease means not only do we have to educate the public, but we also have to educate the people who have the condition."

Doctors, too, need better training, Botticelli said.  "I think that when it comes to treating people with addiction that it just can't be an optional activity for medical practitioners anymore."

"MAT has always had to sail against a horrific wind to stay afloat," said Roland Lamb, deputy commissioner of Philadelphia's Department of Behavioral Health and Intellectual disAbility Services. "I challenge anyone to tell me if I'm a type 2 diabetic, that I don't need to be on medication, and I can manage my disease with exercise and diet, that I'm a better person than someone who needs medication to manage their diabetes," Lamb said.

Although it's true that some people are able to get off heroin just through abstinence, "those people are extremely rare," said Barclay of Prevention Point.

"Sure, there are some people who can walk a tightrope between two buildings at 1,000 feet, but there aren't too many of them."