Opinion: The U.S. mental health care system failed my brother — and millions like him

On Feb. 25, I got the phone call I had been dreading for years: My brother Louis was dead.

I was dumbfounded. We had just spoken 48 hours earlier.

My sister and I had finally found a rehabilitation program that would treat all three of his afflictions — manic depression, anxiety, and alcoholism — and not just one of them, as had happened so often in the past. For the first time in a long time, we had hope that Louis would finally get the help he needed and deserved.

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His last text to us read: “Tell everyone I’m going to do this.” By “this” he meant live again. Work again. Establish healthy relationships again. Many of us take these things for granted — but for someone like Louis, they are fleeting treasures.

He checked into the program’s facility at 1 p.m. Around 11 p.m., he was found dead in his bed of “natural” causes. He did not live to see his 52nd birthday.

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The coroner told us that our brother’s heart was enlarged — a medical red flag. But we always knew Louis had a big heart. The story goes that when I was a newborn, Louis was the only one who could get me to stop crying. Seven years older, he made it his job to hold me as much as he could. Yet for all his love and affection, his dark moods and outbursts became too much for my mother to handle, and she sent him to live with his father. That environment compounded his issues: Louis started drinking alcohol by age 13; five years later he was a full-fledged alcoholic.

Our parents — hard-working, blue-collar immigrant citizens — never imagined that their son suffered from manic depression, anxiety, and bipolar disorder. Like everyone else around him, they just thought he was a troubled kid with a rebellious streak, your basic problem child.

Louis’s doctors weren’t much help either, failing to diagnose his mental illness early. Even if they could have helped, the cultural stigma and shame that came (and still comes) with mental illness made it easier for our family to sweep his behavior under the rug.

Sadly, my brother’s story isn’t rare. Nearly 7.7 million children and teens in this country — about one in seven — have at least one treatable mental health disorder. But only half of these young people receive the treatment they need, according to a 2016 report in JAMA Pediatrics. I can only imagine how much worse the problem was when my brother was growing up in the 1970s and 1980s.

Louis’s slide into alcoholism was predictable. “Almost half of kids with mental health disorders, if they’re not treated, will end up having a substance use disorder,” explains Sarper Taskiran, a child and adolescent psychiatrist at the New York-based Child Mind Institute. But instead of empathy for his mental illness, Louis was judged for the substance he chose to mask it. It was easier to label him an alcoholic than a manic depressive.

Over the years, he occasionally called my sister and I with a spectrum of emotions — anger, sadness, confusion, love. I now understand those were alcohol-induced manic episodes. When he finally reached out for help three years ago, I went all in for him. This was my chance to pay him back for all the times he soothed my tears as a baby.

But by then, alcohol had taken its toll. Louis’s liver was shot, his kidneys failing.

In the last two years of his life, he had extensive hospitalizations in four different hospitals. During each hospitalization, I hoped that someone would work with me to get Louis help for his mental health issues, not just his physical ailments. I knew that once he was discharged the cycle would start again. But the behavioral health teams in each hospital evaluated him and said he was fine. But he wasn’t. Somehow, the nurses’ complaints about his outbursts, or his escape to buy alcohol in his hospital gown, weren’t red flags.

I called a half-dozen outpatient rehabilitation programs in hopes of getting him enrolled. But if you can’t pay the fees or don’t have insurance to cover it, you’re out of luck. I helped Louis apply for Medicaid, but he got caught in a hopeless web of paperwork and appeals. Ditto for disability insurance. By the time the company handling his disability insurance claim called to say they were working on his file, he had been dead for a week. Since then, they have called twice to get the details of his death to reimburse the providers who treated him along the way. That made me really mad — they didn’t call while he was fighting for his life, but the moment he died they were pressing to get the doctors paid.

Louis’s last hospitalization came in January 2021. He had left Georgia, where his family was and made his way to Miami in hopes of reconnecting with old friends and rebuilding his life in a familiar place. Shortly after arriving, he went on a drinking binge, then drove himself to the hospital. He knew his body was shutting down.

The hospital treated Louis for a week. Dialysis was started to do the work of his failing kidneys. When the care team decided he wasn’t getting better, the doctor called me as next of kin and said it was reasonable to expect my brother to go into cardiac arrest at any moment. Yet to my surprise, a nurse called a few days later to tell me that Louis was being discharged. I asked the hospital to hold him a bit longer because he had no family in Miami, no job, and no one to help him get the follow-up care he needed. The case manager coldly told me, “That’s not our problem — there is no medical reason to keep him here.”

So we booked a local hotel for Louis while we continued our search for a place that would treat him holistically.

Two weeks later, we got a break. My sister, who works for a behavioral health organization, was able to get my brother a spot in an associated inpatient program in Orlando. The program would treat Louis’s addiction and his mental health issues — and do it at no cost. We couldn’t believe it. He couldn’t believe it. But there it was, the chance of a lifetime.

Too bad it came a dozen hospitalizations, five Medicaid appeals, seven program rejections, and decades of alcoholism too late. Had Louis’s anxiety and bipolar disorder been diagnosed and treated decades earlier, he would still be alive today.

I tell my brother’s story to put a name and a face to the thousands and thousands of Americans who slip through the cracks in the behavioral health care system. Those of us working in the health care industry need to focus more attention on identifying people who may be suffering from mental health conditions — particularly those masked by addictions — before it’s too late.

Doing so will not only ease the mental anguish of people with mental health issues but will also improve their overall health. Whether it’s the alcohol-induced organ failure that killed my brother or the untreated depression that prevents people from taking their medication, exercising, or following a healthy diet, mental illness is often a comorbidity and contributing factor to chronic disease. Treating it as such early in life will save the U.S. health care system billions of dollars in treating the downstream consequences.

This won’t be easy. It will require a concerted effort on behalf of family members, friends, and providers across the care continuum to monitor for signs of mental illness and to prioritize treatment of mental illness without stigma or shame. It also means being mindful of patients’ socioeconomic or cultural backgrounds, and how those backgrounds might put patients at increased risk of mental health issues, or make them more likely to try and hide or ignore their illness like my brother.

I’ve worked in health care data analytics for decades, and for as long as I can remember I’ve been hearing about the importance of understanding how socioeconomic and behavioral risk factors affect patient outcomes. How many times do we need to hear that these factors drive 80% of health outcomes before we start funding and staffing programs to address these factors? My brother fell victim to these risk factors even with my sister and me advocating for him. What happens to those whose families don’t have access to the same resources?

Parents need to be taught how to recognize early warning signs of mental illness, and schools need better behavioral health resources to help kids early. The U.S. should also fund routine training and education for health care providers, not only on how to recognize signs of mental illness but on how to be compassionate to people with them. For a case manager to say “that’s not my problem” is unacceptable.

Finally, the health care industry needs to address barriers to care — including cost barriers. No one with mental illness should have to spend years of their life looking for a program that will treat them holistically at a cost they can afford. The U.S. needs a more equitable health care system, one where everyone has a chance to get the help they deserve — one where people can not only live with mental illness, but thrive.

Lizzie Feliciano is the chief marketing officer of Jvion, a clinical AI company.

Source: STAT