Michel Cote would be a rich man by now — if only he could have found good addiction treatment much sooner.

Cote worked for years as an engineer at two Silicon Valley startups. Both were sold to bigger companies and Cote made hundreds of thousands of dollars from the sales. At the time, he planned to use particularly the second sale for college funds for his daughters, who were then 12 and 13. The rest could go to retirement.

“I worked really hard,” Michel said. “I was hoping that was the one we could set aside — start breathing, relaxing.”

Then, in 2009, he found out both his teenage daughters were using drugs. They would ultimately grapple with addictions to opioids and meth, with treatment draining those potential college funds and retirement savings.

Michel estimates that he spent about $200,000 on treatments for his daughters over the next decade. His itemized tax deduction for “drug treatment facility and therapy” totaled $82,350 in 2009 alone. Most of the treatment facilities his daughters attended rejected evidence-based treatments and practices, but Michel — like many parents and loved ones — didn’t realize that at the time.

“I got to a point where I didn’t think anything would work,” Michel said, adding that his ex-wife, Johane Amirault, kept pushing their daughters to treatment. “I actually thought that this was probably hopeless and it was just a matter of time until the big disaster hits. But we had to keep trying.”

Walled off from the rest of the American health care system, the rehab industry has failed to meet the same standards as other medical providers. Regulation, primarily by the states, is lax, letting facilities offer care that doesn’t meet rigorous scientific or clinical standards. Even though addiction is widely understood to be a medical condition that requires medical treatment, it’s still not often treated as one — with rehab facilities sometimes not employing even a single nurse or doctor.

Once Michel’s daughters received medication-based treatment, they got better. Unlike many costly treatments, studies have found that medication can be effective in helping patients overcome addiction. And it’s frequently far less expensive. Both daughters are now in recovery: the older for more than two years and the younger since early 2019.

Michel is not alone. As part of The Rehab Racket, Vox’s investigation into the US addiction treatment industry, hundreds of people have reached out through our survey to share their stories about spending tens or hundreds of thousands of dollars on addiction care only to receive inadequate or even damaging treatment — all in the middle of an opioid epidemic killing tens of thousands of Americans each year.

The Rehab Racket is Vox’s investigation into America’s notoriously opaque addiction treatment industry. We’re crowdsourcing patients’ and families’ rehab stories, with an emphasis on the cost of treatment and quality of care. If you’d like to help our reporting by sharing your story, please fill out this survey.

Among the many responses, there are success stories that make clear that recovery from addiction is possible. Treatment, when evidence-focused and accessible, can help.

Experts say there are a few markers that set good treatment centers apart from bad ones. Providers should offer comprehensive care — not just for addiction, but other physical and mental health conditions as well. They should offer medications, such as buprenorphine or methadone for opioid addiction or naltrexone for either alcohol or opioids. Patients should not be kicked out merely for relapsing. Treatment centers should have licensed medical professionals on staff and, ideally, be linked to a bigger health care system. (With help from experts, Vox put together a list of what to look for in addiction treatment.)

But there’s no reliable guide for finding treatment in the US, and health insurers and the rest of the health care system provide little guidance as to what works and what doesn’t (though some advocacy groups and companies are now working to change that).

In the meantime, few families know how to look for the features of a good treatment, which aren’t necessarily easy to verify. Yet the difference between picking the right facility and the wrong one can be life or death.

“We don’t need to come up with a homespun guide to how to access cancer care or stroke care,” Sarah Wakeman, an addiction medicine doctor and medical director at the Massachusetts General Hospital Substance Use Disorder Initiative, told me. “It’s pretty ridiculous that the responsibility is put on patients and families to try to navigate this really broken system.”

Patients and families can’t tell good from bad treatment

In 2009, Michel’s older daughter, Emilie, then 15, got caught by her high school with ecstasy in her backpack. The school called Michel to their office. As he waited, he got another call: His daughter had been caught with drugs, and he needed to come to the school right away.

“I’m here in the office,” Michel recalled saying, confused.

But it was actually his younger daughter’s school calling. Danika, then 13, got caught on the same day.

Emilie said “a lot of different things” contributed to her early drug use. There were problems at home and school, and she was bullied. “Drinking and using just became the way to cope with things,” she told me. And, she added, it helped her find friends — letting her “hang out with people I didn’t feel like had standards that I didn’t meet.”

Danika couldn’t pinpoint any particular circumstances that contributed to her drug use and addiction, but she told me that drugs helped her deal with anxiety and social awkwardness. “Using made that easier, and it just became habit,” she said. “I felt like I couldn’t socialize or do normal things without it. And then it just escalated.”

For Michel, though, it was then clear that he had to get both of his daughters to addiction treatment. With the advice of a friend, he hired a special consultant to help figure out how. Michel and Amirault, the mother, sent the older daughter to Second Nature Entrada (now known as Evoke Therapy) in Utah and the youngest to Pacific Quest in Hawaii, each costing around $19,000.

Even with the resources — not just for treatment but for a consultant, too — the family would soon find itself in a decade-long struggle to find any treatment that could help. Over the next 10 years, the family went through the same cycle again and again: The daughters would go to treatment for their opioid and meth addictions, either graduate or be kicked out, and relapse, sometimes just a few days later. Between stints at rehab, the Cotes had to deal with arrests and jail time, overdoses, and other drug-related health problems. They lost friends to opioid addiction, like Hannah Dakota, whose death led to an addiction treatment and education fund.

Looking back at the overdoses, Danika said that they did little to push her to treatment. “I didn’t want to die, but I didn’t care if I did,” she said. “The first thing I would do if I woke up at the hospital is leave so I could go get high.”

Michel provided documents showing his daughters went to New Life Recovery Centers ($12,150) in San Jose, California; Safe Harbor Treatment Center ($7,200) in Costa Mesa, California; and Summit Estate Recovery Center ($500) in Los Gatos. He said his daughters also went to the Camp in Scotts Valley, California; Sovereign Health in Los Angeles; Sunrise in Utah; and several other facilities in California and Florida. It all added up, he said, to around $200,000. Sometimes Michel’s employer-provided health insurance paid for the treatment, but at times it did not.

“All these facilities always claimed to be great,” Michel said.

When contacted, the treatment facilities declined to speak to specifics in the Cotes’ cases, citing privacy concerns. But several spoke in general terms about the kind of treatment they provide, verifying the Cotes’ accounts.

Health insurer Kaiser, which the Cotes had before, didn’t respond to requests for comment.

A spokesperson for UnitedHealthcare, which the Cotes have now, said the company will “engage with the family to ensure they are aware of available benefits and services under the family’s insurance plan.” It will also attempt to address some billing issues with an out-of-network treatment provider that led to out-of-pocket charges for the Cotes.

Rehabs often follow strict one-size-fits-all approaches

In the Cotes’ experience, many treatment programs adhered to a one-size-fits-all approach based on the 12 steps of Alcoholics Anonymous. The research shows 12-step treatment is effective for some people with alcohol addiction, but the evidence is much weaker for other drugs, and many people with drug addictions don’t do well under a 12-step regimen.

Both the daughters struggled especially with the approach’s emphasis on submitting to a “higher power.”

“I had a really hard time with the whole God thing,” Emilie, who’s “not religious at all,” told me. Danika agreed. But both of them said they found value in the social aspects of 12-step meetings, although Emilie added that she felt shamed as a person addicted to heroin.

Treatment facilities would also set strict rules about what patients had to do, like what meetings they would have to go to and what benchmarks they would need to meet in their recovery, then kick patients out after the slightest infraction — including a relapse. When she got kicked out, Emilie said, “I felt like I wasn’t good enough to get treatment. … I felt like I wasn’t a qualified human being.”

This is unlike how the rest of the health care system works. “If you were in the hospital for a heart attack and you had another heart attack, we wouldn’t discharge you from care,” Wakeman, of Massachusetts General Hospital, said. “We would intensify your care and think what more we need to do medically.”

But the unforgiving, rigid approaches the Cote sisters encountered plague the addiction treatment system. Many facilities kick people out for just relapses, which is, to the contrary, a sign a patient needs more help. About 70 percent of addiction treatment facilities use the 12 steps. And even when 12-step facilities claim they embrace other forms of care, they often don’t in practice — and shame those who try the alternatives, especially medications.

Michel said he tried to verify that the addiction treatment was good, visiting rehabs before sending his daughters to get a better sense of how they were run. But it was difficult to make sure the treatments actually did what they claimed, and the family didn’t know what would actually work — whether there even was a better option for them than the kind of 12-step, no-medication approach they kept getting.

That changed with Los Gatos Recovery Center, which over the last couple years got both of Michel’s daughters on buprenorphine, a medication for opioid addiction that reduces cravings and withdrawal symptoms. And the clinic worked with them after relapses instead of kicking them out. (But even this facility wasn’t perfect: Their doctor there was recently charged with insurance fraud over work at an urgent care clinic. The Cotes continued to get help at Los Gatos Recovery Center after the charges.)

Buprenorphine, Emilie said, was crucial to her recovery. It gave her “enough time away from the euphoria that you get from heroin.” She added, “I felt like I could rebuild my life without absolutely needing that feeling.”

Medications are considered the gold standard of care for opioid addiction by experts and supported by public health groups like the World Health Organization and the Centers for Disease Control and Prevention. Studies show that medications reduce all-cause mortality among opioid addiction patients by half or more, and they do a far better job of keeping people in treatment than non-medication approaches.

“Every treatment we tried that didn’t include some form of medication to manage the symptoms would cause very rapid relapse. We’re talking three days,” Michel said. “That happened over and over and over — and every time it’s like a thousand, two thousand [dollars].”

But most treatment facilities that Emilie and Danika attended rejected or stigmatized medications for opioid addiction — largely due to the moralizing, false view that taking medications for addiction is “replacing one drug with another.”

This is typical: The majority of addiction treatment facilities in the US don’t offer any of the three FDA-approved medications (buprenorphine, methadone, and naltrexone). And those that do offer medications often limit their use to detox instead of the longer-term maintenance therapy that’s frequently needed for opioid addiction.

Until Los Gatos, the daughters couldn’t find a treatment facility that offered medications, used an approach besides the 12 steps, and worked with them even through relapses. “It was the only place that really worked with me,” Danika said. “Most of these places, whether they want to say it or not, at the end of the day it’s still a business, so it’s about the money: If you are trying to get [in recovery] and you get kicked out, you might come back later.”

It took eight years for Emilie to enter recovery. She eventually tapered off buprenorphine and enrolled in college — first at Gavilan College in Gilroy, California, and now De Anza College in Cupertino, California — for a major in physics. She boasts about getting nearly straight A’s — with the exception of a B in chemistry, she said, sighing.

For Danika, getting into recovery took nearly a decade. She’s now on naltrexone, another medication for opioid addiction, after tapering off buprenorphine. She works full-time at Smashburger, a fast food chain. Though she still faces lingering legal issues and medical bills, she’s feeling hopeful about her future — buoyed by her relationship with her family, her job, her own home, and her hobbies, like roller skating.

“Once I got things that I care about, it’s a lot harder to go back,” Danika said. “If you have nothing to lose, it doesn’t really matter.”

There is highly successful, evidence-based treatment

Addiction is a difficult disease to treat, and it takes a long time to fully recover from it. John Kelly, an addiction treatment expert at Harvard, estimated that full recovery takes five years, explaining that it’s not until then that people in recovery are about as likely to misuse drugs as the general population.

That doesn’t mean someone needs to be in residential rehab for five years. In fact, experts estimate that fewer than 20 percent of people with a drug use disorder will need inpatient treatment at all. But patients will need some kind of ongoing care, whether that’s intensive outpatient, monthly talk therapy, or quarterly checkups.

Beyond medications, there are other evidence-based treatments, like cognitive behavioral therapy, motivational interviewing, and contingency management, which can be used alone or in combination with medications.

But it’s difficult to know, Kelly said, what kind of treatment will work best for any specific person. Studies trying to tease this out have generally disappointed. That’s why treatment facilities need to be accessible and flexible, so providers and patients have the room to find out what works best for each individual in recovery.

The problem is that for patients and families, desperate to get themselves or their loved ones into potentially lifesaving care, it’s hard to tell the good from the bad. They don’t have the time, means, or ability to read through a bunch of research on what kind of treatment can work. So treatment centers, even well-intentioned ones, often sell care that ultimately doesn’t help — at the cost of thousands of dollars or more.

“When people are desperate, they’ll believe anything. They want to believe you’re telling the truth. So they are vulnerable,” Kelly said. “It’s tragic to see so many people taken advantage of.”

Some organizations are now working to change that. Tami Mark, a health economist at the research institute RTI International, has teamed up with the Shatterproof Foundation, an advocacy group, to develop a sort of “Yelp for rehab.”

Based on data from provider surveys, insurance claims, and user evaluations, the app will try to guide patients to facilities that provide high-quality addiction treatment. It will be up for the public in six states (Delaware, Louisiana, Massachusetts, New York, North Carolina, and West Virginia) in May 2020, and a full nationwide rollout will continue over the following year.

Until then, there are currently some navigation tools like the Substance Abuse and Mental Health Services Administration’s treatment locator and the National Institute on Alcohol Abuse and Alcoholism’s treatment navigator. But these still leave it largely to the patients to make judgment calls based on broad guidelines that both federal agencies provide.

So patients and families are, for now, largely on their own.

Looking back at the decade-long journey, Michel said he still doesn’t have all the answers. But he concluded that it was important to never give up, as hopeless as the circumstances could feel at times. “What we learned since then is you have to keep trying, keep trying, and you don’t know when the recovery will happen,” he said.

Things aren’t perfect for the Cotes, but they’re much better. Danika is thinking of going back to school, maybe to become an emergency medical technician. Emilie is looking to finish her physics major and become a theoretical physicist. She excitedly described the work of Miguel Alcubierre on “warp” drives and how she would love to build on it.

“I always had ideas, things I wanted to do in my life. Honestly, I never would have thought that I … was capable of doing it,” Emilie said. “I’m not letting things that I would have let fear get in the way of before get in the way now.”

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We’re shining a light on the problems with the addiction treatment system in America and how they’re affecting people, financially and otherwise, every day. Please help our reporting on the high cost of addiction rehab by sharing your story with us. You can also sign up for our email newsletter to get updates on the project.

If you or someone you know needs addiction treatment, you can seek help online through SAMSHA’s treatment locator or by phone at 1-800-662-4357. If you need more information, Vox put together a guide for how to find good addiction treatment.