1,000 people sent me their addiction treatment stories. Here’s what I learned.

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Since September, I’ve asked Vox’s readers to tell me their stories about drug addiction treatment for our Rehab Racket project. In less than four months, we’ve gotten a lot of responses — now more than 1,000.

The responses range from tragic stories about overdoses and early deaths to more optimistic ones about recovery. They’ve come from all over the US, including every state and Washington, DC, and Canada, the United Kingdom, Germany, Switzerland, South Africa, and Australia. Most of the stories come from addiction patients, although parents, spouses, siblings, and other relatives and friends of patients have sent in their stories as well.

From all of these experiences, one theme emerges: Addiction treatment in the US is expensive, hard to navigate, and far too often fails people. In the middle of an opioid epidemic that’s helped lead to more than 700,000 drug overdose deaths since 1999, America’s main defense against addiction is deeply flawed.

The stories we’ve published so far speak to these problems. Kim and Tim Blake spent more than $110,000 on treatment for their oldest son, yet much of the treatment was unhelpful and he died anyway. Michel Cote’s daughters went through $200,000 worth of treatment over a decade before they finally found something that worked for them. Nan Warren faces financial ruin after she lost her oldest son to addiction and has spent years trying to avoid the same fate for her surviving daughter.

Health insurance alone is not enough to protect patients from high costs and low quality. Maureen O’Reilly lost her son to addiction after their health insurance plan wouldn’t cover addiction care near home and he was sent to shoddy treatment facilities — some of which were later shut down — in Florida.

Most recently, Ian McLoone told me about how methadone helped him overcome opioid addiction — an example of how treatment can work if it’s evidence-based and supported, but also about the barriers McLoone faced due to the stigma and strict regulations around medications like methadone.

This is just the beginning. The Rehab Racket will last at least a year, possibly longer, and we’re less than four months in. With the end of the year approaching, though, I wanted to take a moment to reflect on what I’ve learned to this point.

Here are four lessons from the project so far — and where I plan on going next.

1) Poor insurance coverage leads to high addiction treatment costs

Just about everyone I spoke to reported at least some problems with getting addiction care covered — because they didn’t have insurance or because their insurer refused to cover the care they needed.

This is a big problem nationwide: Based on the National Survey on Drug Use and Health, federal researchers estimated that roughly 314,000 people in the US in 2018 needed drug addiction treatment but couldn’t get it because they didn’t have health coverage and couldn’t afford the costs. About 100,000 couldn’t get it because, while they had health coverage, it didn’t cover treatment at all or it didn’t cover the full cost. (There’s some overlap between the groups because participants were able to select multiple responses.)

A recent report by Milliman, a consulting company, found commercial insurance coverage of addiction treatment may be getting worse, at least relative to more conventional health care. It found that inpatient drug addiction treatment facilities were 10.1 times more likely to be out-of-network compared to medical or surgical inpatient facilities in 2018, up from 4.7 times more likely in 2013. There were similar and rising disparities for outpatient facilities too — making drug addiction treatment overall more expensive and harder to access.

Maureen O’Reilly experienced some of these problems firsthand. Her son, Ed Fahy, tried to get into addiction treatment facilities near home in New Jersey. But Horizon Blue Cross and Blue Shield, the family’s insurance plan administrator, refused to cover the programs. Fahy ultimately found addiction treatments that the health plan would cover in Florida, but there he got caught in the “Florida shuffle,” a quagmire of low-quality, weakly regulated addiction treatment centers and sober homes. He overdosed and died at a sober home that was later shut down by law enforcement.

The story reflects the problems with insurance coverage: Insurers often don’t want to pay for addiction treatment that can be fairly expensive, and they also don’t know what’s good care that’s worth covering.

O’Reilly is now suing Horizon and its behavioral benefits manager, Beacon Health Options. Horizon said in a statement that “the claims being made in [O’Reilly’s] lawsuit are untrue, unfounded, and unfair.” Beacon declined to comment.

O’Reilly is not alone. While reporting her story, I spoke to other family members of addiction patients who sued insurers. Some of these families have landed big public victories: In Wit v. United Behavioral Health, a federal court found United had illegally denied mental health and addiction treatment coverage to tens of thousands of patients. The ruling will likely be appealed, but if it succeeds, it could set a precedent for the industry.

Insurers, at least, seem to be aware of a problem. Many of them, including Horizon, Beacon, and United, have teamed up with the advocacy organization Shatterproof to develop better standards for addiction care.

All of this helps explain why US drug addiction treatment can be so expensive: Insurance is the system that’s meant to shield Americans from huge health care expenses, but it’s often not doing that for addiction care.

2) We know disturbingly little about addiction treatment in America

While reporting on addiction treatment in the US and asking experts about the evidence for addiction care, there has been one answer I’ve gotten used to hearing a lot: “I don’t know.”

It was a common response when I asked if certain addiction treatments worked. Many facilities, for example, now use equine therapy, in which patients connect with horses. But we have next to no research on whether this works. The same is true for wilderness therapy that emphasizes outdoors activities, which also has little reliable scientific evidence behind it.

It’s not that these methods are proven to not work. We just don’t know if they work. This is a very strange thing to occur in what’s supposed to be health care: Normally, treatments follow evidence. Patients usually don’t want doctors trying a bunch of stuff on them and hoping something works out.

But the lack of evidence for effectiveness is largely standard in addiction treatment. The vast majority of treatment facilities don’t even track real outcomes for what they do. Some of these facilities claim to do so, but they usually only use follow-up surveys that are riddled with bias and errors; for example, a patient can claim he hasn’t used drugs, and the survey taker will make no effort to actually verify that.

This is not just a failure of the industry, but of the law and regulators as well. The Centers for Medicare and Medicaid Services “has over 4,000 quality measures,” Tami Mark, a health economist at the research foundation RTI International, previously told me. “There are none for addiction programs — zero.”

At the same time, we have little indication about what kind of financial impact addiction treatment is having on American families. There’s just not much research on it.

Mark, along with the advocacy group Shatterproof, is now undertaking an effort to fix that by creating a sort of “Yelp for rehab” that will try to guide patients to evidence-based care with the use of provider surveys, insurance claims, and user evaluations, starting next year in at least some states.

For now, though, patients are largely left in the dark about whether a treatment facility really is following the evidence.

3) We don’t make good use of what we do know about addiction treatment

There are, however, some things we know about addiction treatment. The problem is we don’t make good use of this information.

For example, the research shows that medications for opioid addiction — methadone, buprenorphine, and naltrexone — are very effective: Studies show they cut the mortality rate among opioid addiction patients by half or more and keep people in treatment better than non-medication approaches.

Yet in the US, the majority of addiction treatment facilities don’t offer any medications. According to federal data, only 42 percent of the nearly 15,000 facilities tracked by the Substance Abuse and Mental Health Services Administration (SAMHSA) provide any type of medication for opioid addiction. Less than 3 percent offer all three federally approved medications.

In fact, treatment centers may even discourage the use of medications due to the mistaken belief that the medications are simply replacing one drug with another. Ian McLoone said one of the rehabs that he went to, RS Eden in Minnesota, pushed him to get off methadone. It was only thanks to an intervention from his mom that McLoone agreed to stay on it.

That “was by far the best decision I could have made,” McLoone said. “Then, I was able to finish rehab, get a job shoveling asphalt that summer, working my ass off. I got into grad school. I got through grad school. And I was able to really have the life and the family and the career that I had dreamed of. Methadone absolutely facilitated that and helped to make that possible.”

The hurdles to evidence-based treatment reflect not just the industry’s decisions but public policy choices too. Needle exchanges have decades of evidence behind them and support from the American Medical Association, Centers for Disease Control and Prevention, and World Health Organization, but they remain illegal in much of the US. Prescription heroin, in which people with treatment-resistant addiction are provided heroin, is supported by major studies — including an extensive review of the research by the RAND Corporation — but it’s received next to zero attention from US policymakers.

The point here is straightforward: If we don’t even use what we know works, then we’re not going to get very far in addressing the opioid crisis or addiction in general.

4) Stigma is a huge issue

When writing about anything addiction-related, there’s an explanation I can expect for just about any problem: stigma. Indeed, it’s the thing that ties the lessons on this list together.

This has stuck with me ever since I went to Vermont in 2017 to see how the state built up its addiction treatment system. When I asked officials about the hurdles to building up the new system of care, I expected to hear a lot about money (a common problem in policymaking). But officials told me, in fact, that money wasn’t that big of a deal. Instead, the main barrier was stigma around addiction, fueled by the notions that addiction is a moral issue — not a health issue — and people with addiction don’t deserve public resources. Once that stigma was overcome, the money came easily.

As I’ve written before, this is the core problem with how the US approaches drug addiction in general. It’s the lasting impact of the country long treating addiction as a moral failure — one that was relegated largely to the criminal justice system to handle — instead of a medical condition that warrants public health resources.

I’ve heard the same, time and time again, with the Rehab Racket project. Why don’t we know much about addiction treatment facilities and their outcomes? How can addiction treatment remain so expensive and so ineffective for many? Why don’t we use the evidence we do have for treatment? Why don’t insurers adequately cover addiction treatment? There is one common answer: Stigma leads to a skewed perception of addiction, or apathy about it, so the public, policymakers, and other actors don’t do enough to change the status quo.

“We’ve had these problems for a very long time,” Keith Humphreys, a drug policy expert at Stanford, told me. “I’ve heard politicians making speeches about, you know, outrage that people with heart disease are waiting in the [UK’s National Health Service] or the quality of cancer care or the dirty conditions at Walter Reed. I have never heard a politician say, ‘I am outraged at the quality of alcoholism care in our community. This is not acceptable.’ Never. I mean, it’s almost unthinkable.”

That’s how these problems keep going: Until enough people overcome their stigma toward addiction, they’re not going to give the problem the attention it requires to solve.

One bit of good news is that a lot of people are ready to combat this stigma. The fact Vox has received more than 1,000 responses to its survey, with most including their full names and personal information, demonstrates as much.

The Rehab Racket project will last well into 2020, and the responses my editors and I have gotten to our survey have given us several leads and ideas we want to continue exploring.

One story I’ll tackle soon is the dominance of the 12 steps. This treatment approach, built around the teachings of Alcoholics Anonymous, is helpful to some, and it has solid empirical approach when it comes to alcohol addiction. But there’s not solid evidence for it when it comes to other kinds of drugs, and some people don’t like the approach at all — yet it’s often what’s foisted on patients in American addiction treatment.

Emilie and Danika Cote, for instance, previously told me that they didn’t like the 12 steps’ emphasis on submitting to a “higher power.” As Emilie, who’s “not religious at all,” said, “I had a really hard time with the whole God thing.” Danika agreed.

But it took roughly a decade for them to finally find a treatment clinic that didn’t drive them to the 12-step approach and that they otherwise liked.

I’ve heard similar things from dozens, if not hundreds, of other patients. Why is that? And what can be done about it?

Another is the financial problems surrounding methadone treatment. Methadone is one of the most well-studied treatments for opioid addiction, with strong evidence behind it. But I’ve now heard from multiple patients that insurance doesn’t cover it, or methadone clinics will refuse insurance — leading to costs that can be as high as $600 a month. Given that some patients can take methadone indefinitely, the cost can add up very quickly. I want to figure out why that is, especially given that, as journalist Alison Knopf has written, methadone itself can be less than $1 a dose.

Finally, I’d like to zoom in on some of the more specific issues in addiction treatment. That will involve shining a light on bad actors in addiction treatment and holding them accountable, but also digging into the examples of addiction treatments that do work and what they involve.

One of the outrageous things about the failures I’ve uncovered so far is that we know that drug addiction treatment can work when it’s evidence-based, accessible, affordable, and flexible. This makes all of the problems in the field even more inexcusable. Hopefully, by putting a spotlight on the places that are getting things right, we can help set an example that the rest of the industry and policymakers can follow.

We want to hear from you

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 at FindTreatment.gov 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.