Imagine needing rehab for, let’s say, a knee injury. Or maybe for a heart condition.
You’d drive around looking for billboards or street signs, text yourself an 800-number to call later, right? Or maybe you’d just consult social media.
No. Of course not.
You would get clear direction and referrals from your doctor or another reputable medical source for all your rehabilitation needs.
That is, unless you or someone you love needed treatment for fentanyl addiction, prescription pill misuse or heroin use.
Fact is, more than a decade into a nationwide epidemic, many physicians in the United States may not know where to send people with an opioid addiction.
So the addiction that killed more than 130 people a day in 2017 has families turning to the only people who they think know what to do: Each other.
And they ask, “Where should I go?”
Answers can come from odd places, like a bus bench ad.
The search might work, but it’s a crap-shoot. Because not every person with addiction has the same needs. Not every treatment center has every kind of treatment. And some places offering help do not accept science-based, best practices for opioid addiction: medication-assisted treatment.
Jennifer Stepp, who trains people to use the opioid-overdose antidote naloxone in central Kentucky, was exasperated as she repeatedly sought help for her addicted son.
“I said, ‘I am not going to bury my son.’ “
“So I proceeded to harass my son and follow him and have him locked up, and took him to court at every opportunity,” Stepp said. “This, of course, was followed by tens of thousands of dollars and years in the revolving door of faith-based treatment, from word-of-mouth.”
“It failed every time.”
Somebody somewhere heard Jennifer and the scores of mothers like her. Certification of facilities is about to see the light of day.
It’s slow, but the addiction experts say help is coming.
For too many, it is too late. For others, it’s could be the godsend they’ve been praying for.
A revolving door
Sammy Stepp, now 28, drug-free, employed and a big part of his family for three years, spent a half-dozen years addicted to heroin despite his mom Jennifer’s attempts to get him help.
Jennifer even taught her youngest, Audrey, then 9, how to use naloxone to save overdosing people. And she continued her hunt for help.
She researched all she could on addiction. It seemed like that’s what you had to do.
Kimberly Wright, of Taylor Mill, Kentucky, knows the feeling. She guides people through treatment options (and in some cases, a lack of options) as founder of the private Facebook group Kentucky Parents Against Heroin.
“Most treatment is found by word-of-mouth,” she said. It is routine to see posts on her page like these:
- Dec 30: My brother needs methadone or vivitrol shot. He doesn’t have transportation.
- Dec 27: Need help! Nephew just showed up at my house & wants help. We are in nky (Northern Kentucky).
- Dec 12: Need Help y’all disabled woman wants treatment but because no one is equipped to take care of her they won’t take her suggestions? Help?
Wright has become an expert at finding help for people.
People don’t know how to navigate the systems sometimes or locate treatment,” she said. “Many are new cases that have no clue where to start.” She and other volunteers walk them through the maze of systems to find the best treatment for their loved ones.
Sammy’s addiction started when he was a teenager. It spiraled out of control and, although she got him through school, Jennifer said she felt helpless when he turned 18: He was an adult, and he did not want help.
Here she was, in Bullitt County, Kentucky, in a families’ group seeking every opinion she could get. She got this one: Send him away to a Florida rehab.
“I heard if you get them far enough away from everybody … a 28-day program, you know, miracle cure!” Jennifer said.
So off Sammy went, for 28 days. He followed the rules.
“I brought him home and I thought he was fixed. That was it,” she said. “I was so proud.”
Sammy relapsed and Jennifer went back to her search. She got Sammy court-ordered treatment through Kentucky’s Casey’s Law, which she thinks kept him alive.
She sent Sammy to small rehabs that were all about abstinence and asked why no doctors were there. “I welcome prayer, but I want some kind of medical treatment, too,” she said.
She sent him to another rehab in Florida. And to an extravagant, beach-side rehab on the West Coast.
She started her own Facebook page, Bullitt Opioid Addiction Team, and traveled to other cities to see what they had.
Sammy had his own frustrations about the treatment, like the fact that many people had used drugs because of childhood trauma. “I didn’t have any of that going on. I had a good childhood. I couldn’t relate.”
He’d go through the motions, but none of it stuck, because his brain had been hijacked by heroin, his mom said, and as such, he felt he had to seek drugs just to feel normal.
“It works for some people,” he said. “But sometimes, you just need a little more than the serenity prayer.”
Sometimes he’d leave treatment because of harsh methods used.
In one facility, he said, “The plan was to break you down to build you back up. They would bring people in … and just lay into them … and have everybody tell them what a piece of shit they are.
“I was just like, I’m not going to sit here and have you guys come at me like that.”
Sammy took off, with two others in the program following. Staff refused to give them their IDs, so Sammy and his pals went to the police, who retrieved their personal property.
Never did a medical doctor see him during these rehab stays and tell him about medication-assisted treatment.
But Jennifer had read about methadone and wondered if it might help.
At a group meeting, she brought up the topic. “And it was like, ‘No. We don’t talk about that in here.’ “
One man said methadone was a crutch.
“I looked at that man and said, ‘When is a crutch a bad thing?’If I broke my leg, no one would care if I was on a crutch. They’d be giving me a crutch so I could get my ass back to work,” Jennifer said.
“What’s wrong with a crutch? It’s a medical device, right?”
She left the group. And finally, she found an addiction doctor, Mina “Mike” Kalfas – a faithful Christian – who espoused and delivered medication-assisted treatment for people with heroin addiction.
It is what has kept Sammy sober for three years.
A way out?
After a long silence, addiction specialists are stepping forward this year to help clear up some of the confusion that families face.
The American Society of Addiction Medicine (ASAM) and the Commission on Accreditation of Rehabilitation Facilities (CARF), an independent, nonprofit accrediting organization, are piloting a national certification program for addiction treatment programs.
ASAM already has a nationally accepted continuum of levels of addiction care. The new plan is to offer certification to programs that show they can deliver services that are consistent with these levels.
When it’s done, people will be able to learn a program’s level, and therefore, the services provided at that level, said Dr. Kelly Clark, ASAM president.
Also, Shatterproof, a national nonprofit focused on evidence-based solutions to addiction, is building a rating system of treatment programs.
Its pilot started with five states, not yet identified publicly, with funding from two national foundations and six insurers. Anyone looking for treatment, from families to insurers and doctors, will be able to access the ratings in 2020.
“We know addiction can be treated with the same effectiveness as any other chronic disease,” said Samantha Aresnault, Shatterproof’s director of national treatment quality initiatives. “But best-practices treatment isn’t always available. And people don’t always know how to identify it.”
Why not sooner?
So why did it take until just now to get this kind of help going?
“Historically, addiction treatment was segregated from the rest of medicine and was only formally recognized as a medical specialty in 2016,” ASAM’s Clark said.
So, she said, “addiction treatment lags far behind the rest of medicine in the development of quality standards and performance measures that help reinforce science-backed treatment practices.”
With alarming rates of overdose deaths in the last 10 years, the addiction experts stepped up. Now, their message is being pushed more fervently than ever: Opioid addictions are best managed with medication-assisted treatment.
Arsenault has another theory about why people often end up with treatment that does not include medication.
“We created a system through policy and payments that has impeded innovation and instead ingrained non-evidence-based practices – for example, normalizing 28-day programs – while hindering widespread adoption of medical practices such as medication-assisted treatment,” she said.
Dr. Navdeep Kang, a Mercy Health psychologist who has led a collaborative of evidence-based addiction care in Greater Cincinnati, said the lack of medical help comes from a long-standing idea that addiction is a moral failure, noting, “Those notions are so old.”
He added, “If you do go to a 28-day program you need to know at the beginning what’s going to happen after 28 days. Not on the 28th day.”
Sammy Stepp was baffled by abstinence-based treatment. No matter how many times he was in care, he felt pulled to use drugs again. He figured he’d die by 25.
Now, though, more residential centers are incorporating medication, and not only the non-narcotic naltrexone, best known by the brand name Vivitrol.
In Kentucky, a new, 180-bed treatment center operated by Transitions Inc. has medical staff and allows for treatment with buprenorphine and, in some cases, methadone.
In Cincinnati, the Center of Addiction Treatment this year is starting a buprenorphine program for patients who need it, said Dr. Deborah Frankowski, medical director.
And there’s this: More doctors are getting certified to prescribe the opioid-addiction medication buprenorphine every year. And more doctors who’ve prescribed it in the past are getting certified to prescribe the medication to additional patients.
Who needs experts?
“Most people do not know what good addiction treatment is,” said Emily Feinstein, executive vice president of the Center on Addiction in New York City, a science-based, nonpartisan nonprofit that researches and promotes policy and solutions to end the addiction crisis in the United States.
“Addiction treatment isn’t one-size-fits all,” added Lindsey Vuolo, the center’s associate director of health law and policy. “It is highly dependent on a specific patient’s needs.”
What’s important to know, say addiction experts, is that while residential treatment is necessary for some patients and not others, it does not provide a lifetime solution.
That’s because addiction is a chronic medical condition and needs chronic disease management, Clark said.
Kang equates it with any other medical condition, saying, “Not everyone gets the exact same solution if they have a heart condition.”
For Sammy Stepp, treatment with buprenorphine was the best answer.
“The first day I took it, I felt like I was immediately my own self again,” he said. “It brings you back to you. To default settings.”
“It was relief,” Sammy said. “Yeah, just relief. It was liberating.”
“I guess you could say I got a second chance. More like a 30th chance,” he said with a laugh. “But one that’s legit this time.”