I had the pleasure of getting to know Steve Winter in 2007 when, as one of the sponsors of the Mental Health Parity and Addiction Equity Act, I helped organize congressional field hearings around the country. The bill — now a law — was designed to require insurers to cover treatment for mental health and substance use disorders no more restrictively than they covered treatment for other illnesses, such as diabetes and cancer.
Steve, who was then 45, traveled to several of those hearings at his own expense to tell his story to help reform what he called "shortcomings of the mental health system" — the very shortcomings that failed his mother and countless other Americans.
Steve was just 16 years old — eating cereal at his home in Akron, Ohio — when he suddenly realized that he was bleeding. A moment later, his mother appeared holding a gun.
"I shot your sister," she yelled. "I shot you, and I want to take my life so we can be in heaven together."
Steve brought an important perspective to the debate on mental health parity.
Steve managed to persuade his mother to drop the weapon even as his own blood pooled around him. All three of them survived, but their lives were never the same — especially Steve's. When his mother shot him, the bullet struck his spinal cord, and he was permanently paralyzed.
He discovered that his mother had previously been diagnosed with schizophrenia and that a recent health insurance change had caused her to stop taking her medications. But the discovery of his mother's illness and the insurance company's lack of care fueled no personal resentment for Steve — only the desire for systemic change in mental health care.
He would go on to inspire many of us to advocate for Americans like his mom to have access to the vital health care they need.
Growing up, Steve had been unaware that his mother lived with a mental health condition because she'd always adhered to a strict treatment regimen that helped her function normally and stably. There's every reason to believe that Steve's mother would have kept up with treatment had their new insurance plan covered it.
Steve traveled at his own expense to tell his story to help reform what he called "shortcomings of the mental health system."
Unfortunately, though, it didn't — and the consequences proved tragic.
As the saying goes, "an ounce of prevention is worth a pound of cure." Even though Steve adapted to his injury with astounding resilience, he needed medical care and equipment for the rest of his life. He estimated that insurance companies paid upward of $2 million for the care related to his spinal injury over the years.
So because his mother was denied vital preventive mental health care treatment that would have immediately saved him and his family from this tragedy, the health care system ultimately paid for years of relatively intensive treatment for his injuries.
Steve brought that important perspective to the debate on mental health care parity. He wanted insurance companies to see the value of such care — for patients and insurers alike — in the long haul.
Ultimately, thanks to advocates like Steve (and my late friend, Rep. Jim Ramstad, R-Minn.), the Mental Health Parity and Addiction Equity Act passed in 2008 and is now federal law.
Unfortunately, even with the ACA and the Mental Health Parity and Addiction Equity Act, insurers still manage to create roadblocks to mental health treatment.
Antidepressants and antipsychotics, primarily used to treat schizophrenia, were also made "protected drug classes" as part of the Affordable Care Act in 2010. Because of that, under Medicare's prescription drug benefit (Part D), plans must cover "all or substantially all" available medicines in those categories. That means patients can fill whatever prescriptions their doctors recommend, without having to worry whether their insurers will cover them.
Unfortunately, even with those stipulations and the protections of the Mental Health Parity and Addiction Equity Act, insurers still manage to create roadblocks to mental health treatment.
Private insurers often cut costs by using "step therapy," which requires patients to try cheaper — often less effective — medications before they're granted access to other treatments. It's only after the cheaper options fail that insurers allow patients to "step up" to more expensive — and sometimes more effective — medicines. Beyond that, under "prior authorization" provisions of some insurance plans, patients and their doctors must petition insurers for permission before they're even granted coverage for certain prescriptions.
Still, despite roadblocks like these, we continue to make progress in pursuit of full mental health care equity for all.
On March 31, Steve Winter passed away of complications resulting from his original injuries — after a lifetime of fighting for better mental health policy. As a result, the coroner listed his death as a homicide. His passing made me more determined than ever to carry on his work and to ensure that mental health care decisions are made by patients and their doctors, not by insurance companies and their bottom lines.
Steve's family should be proud of the legacy he leaves behind, because his story and his passionate advocacy opened many eyes to the real failures in our health care system. Now it's our turn to be his voice.