Nan Warren with her daughter Erin Kane near their home in the Raleigh, North Carolina, area. | Jeremy M. Lange for Vox
A mother’s story on the grave cost of addiction treatment in America.
In 1983, Nan Warren’s first daughter died at the age of 2 of congenital anomalies. In 2005, Warren lost her first son to a heroin overdose.
In the decade and a half that followed, Warren has fought to prevent the same fate for her surviving daughter, Erin Kane, who was addicted to alcohol. But Warren struggled, constantly wrestling with insufficient health insurance coverage, and was unable to pay the amount treatment facilities charged, which could range in the tens of thousands of dollars.
“I read your article about the family who spent $200,000,” Warren, 65, told me. “The difference between them and me is that I have never had $200,000 I could spend.”
Warren said she’s spent more than $40,000, including the cost of travel and related expenses, to get Erin to addiction treatment. To pay for that, Warren had to refinance her house, eventually sell the home, load up her credit cards, and tap out an inheritance from her father and the rest of her savings. Her daughter has suffered financial consequences as well: Warren estimated Erin is at least $60,000 in debt — and may need to file for bankruptcy to get out of it.
The good news is Erin, who’s now 33, hasn’t had a drink since March 2017. But living with her mom near Raleigh, North Carolina, she still struggles with an eating disorder — only recently finding a therapist who takes Medicare, which she’s on due to a disability, to help with that.
Meanwhile, Warren, who is looking for work, estimated she has “about three more years. Then, I would have less money than it would cost me to live anywhere I can think of living.”
The circumstances aren’t abnormal in America.
Warren is one of more than 800 people who have contacted Vox for our Rehab Racket project, which is investigating the high cost and poor quality of the US’s addiction treatment system. Some patients and parents, spouses, siblings, and friends have told us stories about paying tens of thousands of dollars — or even hundreds of thousands — for addiction treatment.
But others haven’t been able to afford treatment to begin with or have gone down a path of financial ruin in a desperate effort to save their loved ones.
The opioid epidemic in America has led to a record number of overdose deaths — including more than 70,000 in 2017, the latest year of full data. Some of these deaths could have been prevented with addiction treatment, which, when evidence-based, can and does work. But only 1 in 10 people with a drug addiction obtain specialty care.
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 did not have health coverage and could not afford the costs. About 100,000 couldn’t get it because, while they had health coverage, it did not cover treatment at all or, at least, the full cost. (There’s some overlap between the groups because participants were able to select multiple responses.)
Because of the financial problems and inability to find affordable treatment, Erin for years had to deal with an untreated alcohol addiction and eating disorder, jail time, and bouts of homelessness. Warren lived in constant fear over what would happen to her daughter, while taking time off work and draining her finances to try to find help. They both now must face lingering financial consequences, from a lost home in Warren’s case to potential bankruptcy in Erin’s.
While things have gotten better for Erin, Warren is still worried about her own future — and if she will end up broke and homeless.
“I look at the ladies pushing their shopping carts,” Warren said. “And my kids will go, ‘Oh, mom, we’ll never let that happen.’ And I go, ‘Well, I don’t know. I can’t trust that.’ Half my children are dead. How do I know I can count on anybody?”
The high cost of addiction treatment
After Warren’s first daughter died in 1983, she poured her time and attention into her son, Alex Kane, who was four months old at the time. She eventually had two more kids, in 1985 and 1994. In 1991, she left behind her full-time career as a lawyer and became a stay-at-home mom. For a while, things were good, as the family lived happily in Newport News, Virginia.
Then Alex, who Warren described as “practically an Olympic-level swimmer,” injured his shoulders during practice, and he was prescribed opioid painkillers around 1998. He then misused the painkillers and, eventually, heroin. In 2001, Warren said, “I found him passed out on the floor with a belt around his arm in his bedroom the first time when he was 18.”
Alex didn’t want to get into treatment, but he eventually stopped using drugs in 2003 and went to college for the 2004-05 school year, getting a 4.0 GPA. Then when technical problems with his student loans led to him missing the first day of classes the following school year, Alex relapsed — dying of a deadly heroin overdose in August 2005.
Alex’s death broke Warren, leaving her unable to do much for a year and a half. “There was literally nothing I could do, except hold myself together for my [surviving] son,” she said. (Her son didn’t want to be part of this story.) “I took him to all his school things and soccer, did all those things for him, and then when he was not there, I sat there and stared across the room.”
Alex’s death also helped trigger Erin’s alcohol addiction.
The two drifted apart when Alex first started using drugs. Erin described herself as a “goody two-shoes” in high school — a champion swimmer with good grades, who told friends she “was never going to drink alcohol.” But once Alex stopped using drugs, and after Erin first got treatment for her eating disorder during her senior year of high school in 2003, the two reconnected.
Then Alex died. With the combination of college life at George Mason University and Alex’s death, Erin began to drink a lot more. Soon, she was drinking daily.
Part of the alcohol addiction, Erin explained, was a “vicious cycle” with her eating disorder, which leads her to binge eat and then purge. Alcohol would tame her eating disorder, but then she would feel she hadn’t eaten enough. So she’d binge eat, and feeling bad about that, she would purge. Then she’d drink more, hoping to tame her eating disorder again.
In December 2007, Erin told her mom that she woke up every morning and shook until she had a drink. “She immediately wanted treatment,” Warren said. “And she wanted treatment for everything — the eating disorder and alcoholism.”
The family first tried going to hospitals, believing that they could help treat Erin. By that point, she was suffering from seizures and hallucinations caused by delirium tremens, the most severe form of alcohol withdrawal.
“The first time, I was in a hospital. I had a grand mal seizure right in front of [my mom],” Erin said. At the hospital, “I remember thinking there were animals in the room with me. I was convinced. I told my mom I wanted to get rid of them. Finally, I got the nurse to come in and accused her of hiding the animals. It was just scary.”
The hospital trips didn’t help, but Warren in the summer of 2008 found the Ridgeview Institute in Smyrna, Georgia. Erin liked the program, which treated both her alcohol addiction and her eating disorder with a mix of cognitive behavioral therapy, dialectical behavior therapy, Alcoholics Anonymous meetings, and other group sessions. She spent three months there, shuffling between inpatient and a halfway house. But it cost at least $75 per day, and eventually her family couldn’t afford it anymore.
Erin had insurance through Anthem at the time, which Warren first bought on the individual marketplace for around $40 a month just for Erin. (The plan was too expensive for Warren, who went without insurance.) This was before the Affordable Care Act regulated individual market plans, and the insurer was resistant about paying for addiction treatment for long. It would pay for a few days of treatment at a time, if it paid at all.
In response to questions about Erin’s coverage, an Anthem spokesperson wrote in an email, “Anthem Blue Cross and Blue Shield is committed to providing our customers access to high quality, cost-effective healthcare services when needed, including treatment for substance use disorders. While Ms. Kane was an Anthem customer from 2008 to 2013, all health plan benefits were administered correctly and consistently per her chosen benefit plan.”
After Erin left Ridgeview, she and her family continued to try to find longer-term care — preferably inpatient — but couldn’t find anything affordable. Erin ultimately went through emergency rooms, halfway houses and sober homes, outpatient treatment, and brief stints at inpatient clinics, each with their own costs. In total, Warren estimated that she spent at least $40,000 on treatment.
While the bills came in, Warren, who had previously divorced, faced problems landing and keeping a consistent job after not working full-time since 1991. “I found out nobody wanted to hire me, because of my age,” she said. “I’ve basically been doing temp work since 2002.” Nowadays, she added, “I can’t even get an interview.”
Warren eventually had to give up her house, ultimately selling it at a loss. She bought it for $258,000 in 2003, spent $62,500 on improvements and repairs after Hurricane Isabel hit that year, and sold the home, after the housing bubble burst, for $280,000 in 2012. She has some savings left, but also about $55,000 in student debt from going back to college for a master’s degree in social work to improve her job chances. She said she has no reliable plan for a full retirement or even survival past the next few years.
It’s not uncommon for families to pay a lot for addiction treatment. Previously, I spoke to the Blakes in Vermont, who paid more than $110,000 out of pocket for treatment, and the Cotes in California, who paid more than $200,000. Other families have responded to Vox’s survey claiming similar costs. But many, including Warren, have said they couldn’t afford the costs to begin with — and, like in Warren and Erin’s case, the costs led to a financial catastrophe.
Why addiction treatment is so expensive
In 2009, Erin got into another treatment facility: the Rogers Institute in Oconomowoc, Wisconsin, where she again tried to get treatment for her eating disorder and alcohol addiction. “I actually loved that place,” Erin said. “I would have loved to stay there for six months to a year if they would have let me.”
But it was very expensive. According to the financial agreement Warren signed, Rogers required a $10,000 deposit for admission. The rate for each day of residential treatment was $758, adding up to more than $22,000 for a month. (This cost is not abnormal for inpatient treatment, which is supposed to be a combination of housing and around-the-clock medical care.)
Within 24 hours, Warren got the call that insurance wouldn’t cover the costs. She refinanced her home, getting about $26,000. That helped pay for a month of treatment, after which Erin left — well short of the six months to a year she said she needed. After a few months in which she struggled to get follow-up care, Erin relapsed.
Problems with insurance plagued the family as it looked for treatment. Over the years, Anthem limited how much treatment it would pay for, and at times refused to pay for care altogether, making it impossible for Erin to get the long-term help needed to recover from both alcohol addiction and an eating disorder. Warren, a lawyer by training, often had to send appeals to Anthem and regulators — leveraging technicalities and citing contract law — just to get the plan to pay for a few days of stays at sober homes and treatment facilities.
Asked about the successful appeals, an Anthem spokesperson wrote, “It is not uncommon for a consumer to seek an appeal regarding a coverage decision. In some instances, the coverage decision may be overturned as part of a thorough, multi-level appeals process that includes review by an external physician.”
Kimberly Kirby, a senior research scientist at the Public Health Management Corporation, a nonprofit research and advocacy group, acknowledged that behavioral treatments can be expensive for insurers. But, she added, “Who says quality addiction treatment should be cheap? It’s a complicated disease.” After all, insurance is there in part to cover all sorts of expensive services for chronic and even terminal illnesses, like heart disease and cancer.
But insurers have long resisted fulfilling such a role in mental health and addiction. A 2017 study by Milliman, a health care consulting company, found that in 2015 insurers on average paid more than 21 percent more for primary care services than behavioral services and that behavioral care was as much as 5.8 times more likely to be provided out of network than physical or surgical care.
Insurers’ resistance in this area is part of a broader historical divergence between the traditional health care system and mental health and addiction treatment, according to Sherry Glied, a health economist and the dean of New York University’s Robert F. Wagner Graduate School of Public Service.
“Mental health services and addiction services have historically been thought of and treated very differently from general health services by health care systems, insurance companies, everybody,” Glied told me. “There are clinical and stigma-related reasons for that, but there are also strong economic reasons for it.”
Some of the causes are straightforward: It costs insurers more money to pay for mental health and addiction treatment. But given the inconsistent quality in addiction treatment — as my own reporting has extensively documented, many addiction treatment centers reject evidence-based approaches in favor of ineffective treatments — it’s also simply harder for insurers to gauge what treatment is worth paying for and what’s not. As Glied put it, “There’s a lot more standardization in what constitutes reasonably good cancer treatment.”
So patients and families are forced to either pay out of pocket for very expensive services, racking up five- and six-figure bills, or to forgo care, like Erin did when she checked out of the Rogers Institute.
The federal government has tried to rein in this problem with parity laws, particularly the Mental Health Parity and Addiction Equity Act in 2008 and the Affordable Care Act in 2010. But the laws aren’t enforced — to the point that the White House’s opioid commission dedicated a section of its final report to calling for better enforcement of parity laws, asking that the Department of Labor get “real authority to regulate the health insurance industry” and that insurers that violate parity laws “be held responsible.”
The cost of treatment can leave families mired in debt and uncertainty
In 2013, Warren dropped the individual plan after the premium had grown to around $300 per month, all while the policy still refused to pay for much of the care Erin needed. The family had hoped that the Affordable Care Act’s Medicaid expansion would help. But in 2012, the Supreme Court made the expansion optional for states — and seven years later, North Carolina still hasn’t expanded its Medicaid program. Erin, however, eventually got Medicaid and Medicare after qualifying for disability assistance in 2016.
In 2015, Erin finally found help she could afford: an Oxford House, a type of sober home, in Cary, North Carolina. It cost $120 a week to live there, which Erin could pay for with a job at Starbucks she had at the time and some help from family for expenses here and there.
The house’s approach, focused on the 12 steps of Alcoholics Anonymous, worked for her, as did the rules and structure imposing a curfew and requiring her to attend meetings and maintain a job. And she got along well with the other people in the home at the time, which hadn’t happened in the past. That help her build, for the first time, a social network of people who don’t use drugs, which can be a crucial step in recovery.
And she finally managed to get medications for depression and anxiety — which “probably helped save my life,” Erin said. She remained at the Oxford House in Cary for more than a year, her longest time at any kind of addiction support service. She relapsed once after leaving but hasn’t had a drink since March 2017.
She now has an 18-month-old son, who, she said, “keeps a smile on my face” and “gives me a reason to keep going.” She’s starting part-time work as a swimming instructor, and she’s back in college, getting an associate’s degree in science that she hopes will help jump-start a career in mental health care and research.
Her mom estimated Erin has roughly $60,000 in debt from medical expenses and a credit rating in the 500s — considered “very poor.” She is facing the prospect of bankruptcy and still struggles at times with her eating disorder. But things are better than they were just a few years ago, when she dealt with blacking out, severe alcohol withdrawal, homelessness, and jail time.
For Warren, the future is bleaker. Her finances have been drained by years of trying to get her daughter into treatment, and joblessness, likely perpetuated by age discrimination, is making it hard to get to a better place. At times, she said, she can’t let herself think about her future.
“I’m so scared of what’s going to happen,” Warren said.
“I don’t know what I’m going to do. I don’t know how I’m going to make it for the rest of my life. I have no idea. I have no cushion. I have nothing to fall back on,” she added. “I’m going to live like I have for many, many years. I’m holding up a house of cards, and trying to keep the cards from falling over, and maybe I’ll get another card just when I need it.”
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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.
Photographs by Jeremy M. Lange, a photographer based in Durham, North Carolina.
This article was originally published at Vox.com