Max Tillitt's parents thought they were close to saving him.

Their son had struggled for years with mental health problems and substance use, products of a violent hit during a junior year high school football practice that left him with a concussion and neck injury so bad he couldn't play anymore.

It changed Max, creating behavioral problems that got him kicked out of school and mixed up with people who opened doors to marijuana, prescription painkillers and heroin. The young man who'd grown up looking out for others in need needed help.

When Max was 21, the Tillitts thought they found an answer, a treatment center where their son finally seemed to be recovering. And they had insurance to cover it — a UnitedHealth plan they thought would pay for Max's treatment costs until doctors pronounced him well.

UnitedHealth, however, had its own methods to decide how much was enough.

Twenty days into the program, UnitedHealth stopped paying for treatment, according to his parents. Max's doctors appealed to the insurer, saying Max was nowhere near ready to leave, but he was discharged. His parents found outpatient treatment and he started improving, but a UnitedHealth mistake interrupted his coverage, his mother said. By the time it got resolved, it was too late. Max had lost momentum.

Max didn't make it to 22, dying of a heroin overdose in 2015 after relapsing and finding his way back to his old dealer.

His story is now part of a class action lawsuit that may include as many as 50,000 people challenging UnitedHealth's standards for behavioral care. U.S. Chief Magistrate Judge Joseph C. Spero recently ripped the Twin Cities-based insurer for placing an "excessive emphasis" on paying for treatments during a crisis while ignoring "effective treatment of ... underlying conditions."

Spero ruled United Behavioral Health, which manages behavioral health services for UnitedHealth members, violated its financial obligation to clients.

UnitedHealth has declined to comment but told the court it can show that its decision making was consistent with "evidence-based treatment and the terms of the health plans."

A 2008 federal law requires insurers to treat mental health care the same way they treat physical health care. Insurers, though, can find strategies around it, such as not having enough people in-network to provide mental health care or making it hard to get the medications people need, said Haiden Huskamp, an economist who studies behavioral health at Harvard Medical School.

Huskamp compares UnitedHealth's behavioral health standard to an insurer covering only an emergency in diabetes, but not long-term management of the disease. They'll cover the crisis, she said, but "when [the patient comes] home, you're not going to cover their insulin or their routine care like their diabetic eye exams or the other kinds of care they need to stay healthy."

DeeDee Tillitt, Max's mother, believes Max would still be alive if UnitedHealth had OK'd more time in treatment.

"It's just so maddening," she said. "This is just such a waste. I mean, you know, he wasn't diagnosed with terminal cancer. He had a treatable illness."

Chuck Lesniak and his daughter pose for picture in 2013 when she was in treatment in Utah. She was 13 at the time. Courtesy of Chuck Lesniak

'They just basically said no'

The class action suit includes UnitedHealth customers from 2011 to 2017 who were working through a wide range of disorders when they were denied coverage.

Like the Tillitts, many believed their policies covered medically appropriate treatment not just during a crisis, but ongoing care for the underlying condition.

Chuck Lesniak of Austin, Texas, said his middle-school daughter developed severe anorexia five or six years ago to the point where she was nearly passing out every time she stood up, "just eating very very small amounts and it became very bad, very very quickly."

An eating disorder specialist in Austin said she either needed inpatient hospital care or care in a residential treatment center right away or she could die. Lesniak was an employee of the city of Austin, which provided employee health coverage through UnitedHealth. The doctor warned them, though, it would be hard to get UnitedHealth to cover it after the crisis passed.

That's what happened. Lesniak's daughter was at the treatment center for six or eight weeks when she reached an acceptable weight, at which point UnitedHealth said it was done paying.

On the doctors' urging, Lesniak said he kept his daughter at the center for about seven more months. The bill topped $200,000. He said he kept trying to get UnitedHealth to pay and even asked the city of Austin to help since the city provided his health insurance. Both refused.

"They just basically said no, you're done," Lesniak recalled. "You've exhausted your appeals and there's nothing you can do. That's your debt and your problem."

Chuck Lesniak and his daughter took a backpacking trip in Big Bend National Park in Texas in 2018. Courtesy of Chuck Lesniak

To pay part of the bill, Lesniak borrowed against his retirement accounts. The family still owes more than $100,000. The treatment center agreed to only take more money if and when Lesniak won back the additional money.

Lesniak's daughter recovered completely, returned to school and was recently accepted to college. Lesniak is sure it was the extended treatment that saved his daughter's life at the time and made it so she didn't relapse. But he's still angry.

"I want these people punished," he said. "I don't want other families to go through what we went through."

Sell a kidney for care?

Carrie Gruman said her oldest daughter Katie was in her late teens when she ended up in an inpatient behavioral health program for anxiety and a very serious substance use disorder. The girl had struggled with mental health problems since middle school.

They let her go away to college after high school, thinking it would offer a fresh start. She had barely started her first semester when her parents got a call that she was in the hospital after trying to kill herself.

The family brought her back to Minnesota and put her into an outpatient treatment program.

She started seeing her longtime psychologist again. Shortly after, her doctor urged the family to get Katie into a residential treatment facility. The one they found was in California, specializing in mental illness and substance abuse disorders — care that could not be found closer to home.

The center's bill hit $172,000. UnitedHealth said it would pay $10,000.

Katie Gruman now lives in Colorado and is working to help other people get access to insurance for behavioral health needs. Courtesy of Carrie Gruman

"We were desperate," Carrie Gruman recalled as she showed a reporter a pile of paperwork and claim denials tied to Katie's care in 2010. "We knew she needed this care or she would have died. We know that for a fact."

Gruman said outpatient care would not have been enough for Katie, but UnitedHealth declined to cover.

"We're trying to fly out and do family therapy and be there and support her and working with the doctors at the treatment center — and at the same time, fighting with our insurance company and going through the appeals process," she said.

The first month's treatment bill came in at nearly $33,000. "We're trying to figure out how to pay for it," she recalled. "I actually Googled how to sell a kidney or a body part because I was like, you know, we have to figure this out."

Gruman kept her kidney. She and her husband used credit cards and borrowed money from family and their retirement accounts.

Katie Gruman lives in Colorado these days. She has other health insurance. And she's working to help other people get access to insurance for behavioral health needs.

Because the Grumans' fight with UnitedHealth started before 2011, her case is not covered by the lawsuit in California.

Max Tillitt poses for picture with his son. Max died of a heroin overdose in 2015 after relapsing. Courtesy of DeeDee Tillitt

'He will be saving thousands of people'

In a statement to MPR News, UnitedHealth said: "We look forward to demonstrating in the next phase of this case how our members received appropriate care. We remain committed to providing our members with access to the right care for the treatment of mental health conditions and substance use disorders."

The class action attorneys suspect there are thousands of UnitedHealth customers outside the suit who were wrongly rejected by the company for behavioral needs treatment. They say they are pushing for an outcome that provides some compensation for them.

"Our argument would be that United has to adopt new guidelines that satisfy generally accepted standards of care," said one of the attorneys, D. Brian Hufford. "That it should improve and change its processes for reviewing and adopting and applying guidelines."

He said he hopes UnitedHealth will go back and reprocess all the claims it denied.

The Tillitts say they ended up spending more than $100,000 for Max's care.

A few months after UnitedHealth stopped covering his inpatient treatment, Max met up with his old heroin dealer, Beverly Burrell. She was later convicted of third-degree murder and sentenced to more than 14 years in prison for the deaths of Max and another man.

After his death, his parents discovered that Max had already booked himself back into the treatment facility and he was due to start there again the following week.

DeeDee Tillitt remembers her son always worried about everybody else. When he was little, he would give his money to people begging in the street.

"It used to make me so mad," DeeDee recalled, laughing, as she sat in her office recently where she works as part of the health insurance industry. "Like, 'Max, I don't want to save everybody, I just want to save you.' And he was just like, 'Oh, Mom, come on, we have to help out so and so.'"

When he got older, helping people meant doing things like inviting friends who had nowhere to go to come sleep on the porch at his dad's house in Eden Prairie.

His mother remembers one time he asked her to help a man he was in treatment with, who was having trouble with his insurance.

"So that was Max," she said. "While he's in treatment, supposed to be healing himself, he's over here worrying about Joe's insurance issues. He's like, 'Oh talk to my mom. ... She knows this stuff."

She was in the courtroom in California for every day of the trial, listening to testimony and watching evidence presented. She said she feels like if UnitedHealth was forced to change the way it operates, it would be one more chance for Max to take care of others.

"He will be saving thousands of people," she said, "and not just maybe saving their lives, but making their lives better and livable. And so that, to me, is the joy."

If you feel you were improperly denied coverage for behavioral health care by United or another insurance company, we would like to hear from you. Send an email to MPR reporter Alisa Roth at aroth@mpr.org, or fill out this form:

This reporting is part of Call to Mind, the MPR initiative to foster new conversations about mental health.