“I’m trying not to die right now”: Why Opioid-Addicted Patients are Still Searching for Help

Access and accountability are still huge barriers in the growing treatment industry.

The Trump administration, Congress and states are pouring billions of dollars into addiction treatment to fight the opioid crisis, but accountability for the burgeoning industry hasn’t kept pace with those efforts — leaving patients vulnerable to ineffective care, fraud and abuse.

Interviews with patients in recovery and nearly two dozen advocates, officials and public health and addiction experts in and out of government reveal a fragmented addiction care industry, with a patchwork of state regulations and spotty oversight.

There are few tools to help patients navigate a complex maze of treatment options that include both inpatient and outpatient medical facilities — as well as “sober living” or “recovery homes,” which have roots in abstinence and faith. And it’s immensely more complicated for patients with little money.

The hurdles to safe, affordable care, accompanied by persistent fatalities across the country, show just how pervasive the problem has become in America, even as the government pours billions into treatment and both political parties search for solutions.

At one site near Denver, patients with good insurance go upstairs to Serenity, a 28-day inpatient and detox facility run by the Stout Street Foundation. It offers medication-assisted treatment, considered the gold standard of care, and provides follow-up services once the patients finish their month long stays.

Most patients who can’t pay for treatment, or those referred by the criminal justice system, go downstairs to Stout Street’s therapeutic community. That two-year program shaves male patients’ heads upon entry, shuns addiction medication and relies on what six former patients described to POLITICO as “confrontational therapy” group sessions. Some of those patients described the experience as traumatic. The program is free, but it contracts out patients to factories or warehouses around the Denver metro area, where they are required to work long hours. Their paychecks go directly to support the center. Near the end of their stay, patients begin to earn money to sustain themselves once they leave Stout Street.

“A lot of things they were making us do were off-putting, but it was either deal with that or be homeless,” said Jesse Wheeler, who was a broke 18-year-old with a heroin addiction when he went through the program. Now 24, he’s off drugs and employed.

State rules vary dramatically. Oversight is flimsy for “sober homes,” while treatment centers overall are regulated more lightly than other parts of the health care system, like hospitals. Medication-assisted treatment is not widely available and is plagued by stigma. According to a study in the journal Health Affairs, just 36 percent of addiction treatment facilities in 2016 offered a form of medication-assisted treatment and only 6 percent offer all three Food and Drug Administration-approved therapies.

“There has never been a system that demands quality of care for treatment of substance use disorders,” said Nora Volkow, the director of the National Institute on Drug Abuse, which has collaborated with advocacy groups on treatment quality. “Programs have not had any incentive to actually change their practices or improve what they are doing.”

Even centers that do offer state-of-the-art treatment — and have accreditations and licenses — have many patients who relapse. Noting that about 50 percent of patients relapse even when they are getting medication-assisted treatment, researchers stress that recovery from opioid addiction is hard, there’s no one-size-fits-all treatment path and there’s still a lot to be learned about what will work best to help people in recovery for the long haul.

In Colorado, both the medically supervised Serenity center and the two-year community downstairs are licensed; the state Health Department demands that the patients give informed consent — even though some are sent there under court order — or go to jail — and that the center follow “best practices.”

Stout Street Foundation Vice President of Programs Nicholas Petrucelli defended the facility’s insult-laced group therapy in an interview and by email, though he said the program screens out patients who could be “triggered” by it. According to the drug abuse institute, “confrontational therapy” has not been proved to be effective and can be harmful.

“It’s a hard program. It’s not for everybody,” said Petrucelli. According to his estimate, fewer than 1 in 4 patients who have entered the program since 2013 completed the full two years. He did not dispute former patients’ descriptions of harsh encounters or punishments like “benching” — making someone sit on a hard wooden bench alone for hours. But he said it does work for some people — they get through the program, learn work skills and sometimes even end up with a job.

The sweeping bipartisan opioid legislation that President Donald Trump signed in October rolls out several new programs, though it doesn’t establish broad accountability. Lawmakers and the administration know their work is not finished.

That new law directs the Health and Human Services Department to develop standards for sober homes, which HHS has said will be completed “in the very near future.” Though nonbinding, the standards will be designed to weed out fraud and ineffective practices.

The Department of Justice has uncovered schemes like a rogue sober home operator who encouraged residents to relapse, so he could bill insurers for more money. Government watchdogs heard allegations of unscrupulous practices, such as treatment centers hiring recruiters to target people with a drug use history as they are released from jail, sometimes encouraging them to start using drugs again so they can enter a program.

Congress recently imposed criminal penalties on patient brokering — a practice in which facilities pay a third party to recruit patients — and it has held hearings on fraud and abuse in the industry. Some states are strengthening their rules; at least 10 have passed laws to improve recovery housing.

But there hasn’t been a coordinated effort to improve and standardize care, even though demand is growing and the government — from the White House to city halls — has made a priority of addressing addiction and reducing the shame and stigma that often have left treatment in the shadows.

Some in the industry are working to weed out bad actors.

“If there’s a silver lining, we’ve become much more aware of [the fraud], and there’s been a level of unity within the field to try to do the right thing,” said Doug Tieman, president and CEO of Caron Treatment Centers, a nonprofit that operates in several states and has been treating addiction for some 60 years.

The opioid epidemic is the biggest American public health crisis in decades, arguably since the emergence of AIDS. Opioids kill about 130 people a day in the U.S. Trump and his top aides have drawn significant attention to the crisis and the need for treatment and law enforcement.

Billions of federal and state dollars, plus more from health insurers and families, are pouring in. But many patients don’t know their options — or whether their insurance will cover treatment that, for inpatient care, can cost tens of thousands of dollars. That’s out of reach for many Americans, and, given copays and deductibles, not only the uninsured. For example, Stout Street’s 28-day program costs upwards of $15,000 per stay; it accepts private insurance and some financial assistance is offered. Federal law generally bars facilities like this from accepting Medicaid.

POLITICO has asked readers twice over the past few months to share their experiences in the opioid crisis and more than 700 people have responded, including some doctors who treat pain patients. Most of those responses were for POLITICO’s first survey about chronic pain. The second reader survey addressed the challenges of rehab and recovery. A smaller number of respondents, roughly 40, shared their personal stories — and about half of them recounted difficulties in finding affordable, quality addiction treatment when every moment counted. Reporting for this article included more detailed interviews with some of those patients — including one who flagged the Denver treatment program — along with other people in recovery and experts on treatment.

“It’s frustrating … like, I need help now. I’m trying not to die right now,” said Mary Early, 32, who waited three months to get treatment after calling about 20 clinics that either didn’t accept her Medicaid or didn’t have room for her. The Lexington, Ky., woman had used painkillers — and then became addicted to heroin.

She finally found a program that worked well for her, though its owners would later be charged with insurance fraud. She made enough progress to get a new job — but that meant losing her Medicaid, which was paying for her treatment. Her new insurance is skimpy, with a high deductible. She’s still in recovery, but without a reliable, consistent source of care. She’s patching it together, a day at a time.

“There’s just no accountability anywhere,” said former Democratic Rep. Patrick Kennedy, who struggled with substance use, became a national leader on mental health policy and served on Trump’s opioid commission. “We really don’t have any way of comparing cost or quality, and we don’t hold providers to measurement-based outcomes. We need a Consumer Reports. We need an Angie’s List. We need it all.”

Nonprofits and medical groups are developing more tools for patients like Early — consumer report cards, rating systems, certifications for treatment programs. It’s unclear whether patients will know how to find them and whether the various organizations will coordinate efforts to streamline the patient’s search, without adding to the noise.

Some people with a painkiller or heroin addiction don’t even get to make their own choices; insurers, employers, drug courts or judges direct where they go. And they don’t always get sent to good places.

An insurer sent Brenda, a 68-year-old from Pismo Beach, Calif., who asked to withhold her last name, to what she called a “poorly run” detox facility for her prescription painkiller addiction. Her withdrawal symptoms were so extreme that she had to be hospitalized after one week. She left the facility and returned to her pain doctor, who prescribed more of the drugs that caused her problems in the first place.

“It was a joke, they didn’t know what they were doing,” she said of the detox center. “I wish I would have taken more time and more care to see where my insurance company was sending me.”

Theron Phipps, 45, from Tulsa, Okla., another respondent to the POLITICO survey, was directed through his employer to a faith-based, 12-step program in Texas. He did not get medication-assisted treatment for his prescription-opioid addiction.

“This wasn’t something faith alone could heal,” he said. His addiction persisted after he completed his program, but he was too afraid and ashamed to ask for medication-assisted treatment. “They all figured I was healed and fixed by that 12-step program, but I wasn’t. And I was ashamed to tell my wife that what I just put my family through didn’t work.”

Like many desperately trying to get help, Phipps wasn’t aware of other options. His home town has been devastated by drug addiction and yet, “there’s not many places where you can look on a billboard or you can get any kind of reading material that offers that. It’s not here yet.”

While states are responsible for regulating treatment, the federal government does have some levers and “can require evidence-based practices be used with federal dollars,” said Assistant HHS Secretary for Mental Health and Substance Use Elinore McCance-Katz. Such conditions are attached to new grants for states, though it’s unclear how closely they are being tracked. And those conditions don’t apply to facilities that don’t take federal funds, like many sober homes.

The Substance Abuse and Mental Health Services Administration maintains a massive public treatment database online, designed to help people find care. But the agency doesn’t vet the list, which is based on state submissions, and can’t ensure all programs provide safe, high-quality care. The agency also has a helpline to connect people to mental health or addiction treatment, though a recent JAMA study concludes that it has not been well publicized.

One expert compared the current state of the addiction treatment industry to that of nursing homes in the 1980s, a period of increased funding, increased need and rapid growth.

“At that time, there was a lot of concern about the quality of care, about the fact that states were regulating the industry, but there was a lot of variation in state regulations,” said Tami Mark of RTI International, which is working on a system to rate addiction treatment programs with Shatterproof, a nonprofit group working to fight the opioid epidemic.

Congress began to regulate the industry, and CMS — a major payer for long-term care through Medicaid — has since launched a government-sponsored website comparing nursing homes, which Mark said has helped improve their quality.

Some federal officials want to see Washington step up on addiction treatment — at least to create a framework and criteria, without necessarily overseeing every clinic or practice nationwide.

“The goal is to kind of set a floor of what best practices are and what’s working,” Sen. Shelley Moore Capito (R-W.Va.), a co-sponsor of the legislation that sets up best practices for recovery homes, told POLITICO as that bill was working its way through Congress. “I don’t think the federal government wants to come in and regulate it, but I think the federal government can be very helpful.”

In the meantime, advocacy groups are working to fill the void — but it will take time, resources and a lot of careful thought about how to reach all the diverse populations that need it.

“We need to really change the information that’s available to families and patients,” said Jessica Nickel, founder of the Addiction Policy Forum, a Washington-based advocacy group. “There’s a lot of bad actors and patient brokers, and a lot of patients get taken advantage of on their darkest day.”

Her organization is hammering out separate standards of care for each type of addiction treatment and recovery service with help from the National Institute on Drug Abuse and a scientific advisory board — which will lead to a provider rating system and a consumer report card.

Shatterproof is creating a rating system for treatment providers and plans to test it in five states in early 2019. And the American Society of Addiction Medicine and CARF International, an independent body accrediting health and human services, is piloting a national certification for addiction treatment.

The National Association of Addiction Treatment Providers, an industry trade group, revamped its ethics policy, and, effective Jan. 1, requires its members be accredited by either the Joint Commission or CARF, according to Mark Dunn, the association’s director of public policy.

Up until several months ago, the Stout Street Foundation boasted on its own website that it was a member of that national treatment group. Stout Street took down that claim after POLITICO checked with the organization and found that not to be the case. Petrucelli said it was an accident, and blamed a third-party website manager.

The National Alliance for Recovery Residences has crafted standards and the alliance’s affiliates in 20 states work to certify those that meet the standards, said Dave Sheridan, the alliance’s president. But losing a certification doesn’t always mean the home shuts down due to federal housing law, he said.

Affordability is another hurdle. According to the 2017 National Survey on Drug Use and Health, 30 percent of people seeking treatment didn’t have health insurance and can’t afford care. Another 10.5 percent said they had insurance, but it either didn’t cover the addiction treatment or only covered a small portion of the bill. In the states that didn’t expand Medicaid under Obamacare, access is difficult for many low-income people.

Stephen, 35, from Chicago, who responded to the POLITICO reader survey and asked not to use his last name, credits his recovery from a decade long drug addiction to his family, who found and paid for his care — and helped him navigate the treatment maze.

“I’m lucky that I have the fiscal resources and a supportive family that cares,” he said. “If I didn’t, I know I would be dead today.”

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