Our insurance halted our son's mental health care, and he paid with his life
“Not medically necessary.”
With three words, our insurance company failed us.
Our insurance company failed our teenage son and as a result, he paid with his life.
We paid with unimaginable, unending, all-consuming grief.
On Jan. 11, 2015, our 15-year-old son, Jake, died by suicide. He died because our insurance company deemed his mental health treatment as not medically necessary, in direct contradiction with the assessment of his doctors.
No other family should have to experience the type of loss we have endured.
Court ruling offered necessary protection
Alongside many mental health advocates, we rejoiced on Feb. 28, 2019, in response to a landmark ruling in one of the most important health policy cases of the 21st century, Wit v. United Behavioral Health (UBH).
In the ruling, a judge found that UBH (the biggest insurer in the nation) was wrong to use its internally developed standards for coverage instead of generally accepted clinical standards. We believed insurance companies would finally be held accountable to make medical necessity determinations consistent with accepted clinical standards, rather than deny coverage based on arbitrary, untransparent, profit-motivated, internally developed criteria.
Now an appellate court panel has put our hard-won gains in peril. Its decision must not stand.
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The trial court ruling in The Wit v. UBH was an enormous win for people seeking mental health treatment – and it would have compelled insurers to change their practices for the better. Those changes would have helped Jake.
Outpatient services weren't helping Jake
Jake was hospitalized twice in one month for suicidal ideation.
During his first hospitalization, he spent five days in the hospital before being admitted to an outpatient program as required by our insurance company. The program was not successful. He was hospitalized again where he was kept for another five days.
We knew he was not ready to come home, and his doctors agreed. Not only did our insurance company disagree, citing medical necessity, they insisted he return to the same outpatient program he already failed at.
Despite our advocacy, and that of his doctors, our insurance company was adamant that he would have to fail at the outpatient treatment program again before he could move to an inpatient program.
We implored them to reconsider but all they could offer was an appeal. We were in crisis as much as Jake, but we resolved to file the appeal.
We received an overwhelming packet of papers in the mail and had no idea what to do and where to start. There was so much data needed and information we could not provide. Our son’s life was distilled into a bunch of medical codes we didn’t understand.
Less than three months later, he completed suicide.
Revisit this ruling so other families aren't at risk
The medical necessity criteria used by insurance companies is steeped in stigma and disparity rather than clinical guidelines. If Jake had a cardiac condition and his doctors believed his heart wasn’t strong enough for him to come home, they would have kept him in the hospital. Why was this any different? Because he had a mental illness.
Shortly before his 15th birthday, in October, they released him, and by Jan. 11, he was gone.
The Wit v. UBH ruling that once brought us some hope for change was inexplicably reversed by three judges in the 9th Circuit Court of Appeals, which includes Arizona. I am unmoored by this alarming and unconscionable turn, which will embolden insurers to make decisions according to their own logic and out of step with clinical standards.
The Wit ruling as it stands means that those who need care won’t receive it. Jake’s doctors knew he needed inpatient care. They knew the severity of his suicidality and that outpatient treatment was not working.
Yet, insurance overruled the medical professionals who knew our son’s severe condition. They didn’t pay for medically necessary treatment, but we did.
We paid the ultimate price.
There is still time for the judges of the 9th Circuit to revisit this case. It is urgently needed. If it is left unaddressed, millions of Americans who are seeking access to treatment may not find it when they need it most.
Denise Schatt-Denslow is executive director and co-founder of The JEM Foundation, which seeks to prevent youth suicide. She and her husband, Ben Denslow, also created the Arizona Coalition for Insurance Parity, whose focus is to enact legislation to ensure that health insurance companies cannot discriminate between physical health and mental health. Reach her at denise@thejemfoundation.com.
This article originally appeared on Arizona Republic: Mental health services should be up to doctors, not insurers
