Insurance demanded we stop our son's mental health medicine to prove he needs it. Really?

As an engineer married to an emergency room doctor, solving problems and finding solutions to challenges is what we did.

But our greatest challenge in life would be as parents. Our son’s mental illness has required treatment since age 5. There is not enough ink to print the stories of all we have endured while attempting to provide our son with a quality of life and dignity that every parent hopes to offer their child.

When harm from undertreated psychosis is an ever-present threat, delays in treatment present so much more than inconvenient obstacles. They can be life and death circumstances.

Drug was working. Insurers weren't convinced

In our quest to find stability for our son within the mental health system, we have encountered amazingly dedicated providers and therapists who respect the needs of all and encourage the journey to health.

However, a health insurance protocol, known as step therapy – where insurers want patients to try a similar drug at a potentially lower cost, rather than the more effective drug that a doctor has prescribed – has presented us with the most unbelievable of circumstances and threatened the hard work of so many.

But most of all, it has endangered the progress toward quality of life for our son. We hope to change that at the Legislature.

To illustrate our fight: For a few years our adult son was receiving an injectable medication that provided the highest level of independence he had ever known and a life balance we had sought for his entire treatment. He received the injection every three months, removing the real concern of the ups and downs from things such as blood levels and compliance.

The result: no ER visits, no calls to or from first responders or crisis intervention specialists, and no hospitalizations. He found health. For years. A quality of life. Until his insurance provider did not approve the next dose.

They approved it. But what about others?

As my son’s advocate, I spent days going through the maze of bureaucracy. Talking to person after person, none of whom were psychiatrists or physicians but utilization managers or customer support staff. Despite having the same private insurance provider for years, I now had to provide the years of data that would indicate this drug was vitally necessary.

The final straw came when I was told that the private insurer was requiring my son to go off the medication, that very one that had brought his greatest level of health in years, so they could determine if he still needed it.

I was shocked and responded that unless there was a cure for schizophrenia that I and the entire medical community was unaware of, medical science would indicate that he did “still need it.” They were demanding my son become sick and risk life and death situations, to meet a paperwork requirement and check a box. 

With diligence we were able to have his medication approved.

But I was left wondering – why should any human being be subject to such disregard for common sense and sound medical care? And what if I was a mom that didn’t have the time and knowledge to commit to such advocacy?

How many parents have a physician-spouse who knew the system? Is this what it takes to ensure our loved ones are safe? That is clearly and undoubtedly unacceptable.

SB 1270 would reform step therapy

The basics of why this is such an unhealthy practice was captured by Dr. Jasleen Chhatwal, MBBS, MD and Arizona Psychiatric Society president: “Physicians not only have to follow guidelines for care, but also take into account the patient’s beliefs, adherence and safety considerations. Weighing these additional factors are part of our training as psychiatrists and the work we do every day.”

But too often, when “step therapy” interferes with the doctor-patient relationship, providers are not able to care for patients according to their training and best medical practices.

Fortunately, there is hope in support of reforms to step therapy, and we appreciate the leadership of Sen. Nancy Barto who has introduced Senate Bill 1270.

This bill puts safeguards in place that will go a long way in removing the burdens of the current protocols. It has passed the state Senate and is now in the House. These safeguards protect patients and return the physician to the position of care provider.

Let’s stop talking about improving care for those who suffer from mental illness and do something about it.

Laurie and Chuck Goldstein are founding members of ACMI (Association for the Chronically Mentally Ill) whose mission is to advocate for people with serious mental illness. Reach them at Gold15@cox.net.