Mental Health Parity?

My book Coverage Denied: How Health Insurers Drive Inequality in the United States has now been out in the world for three weeks. While it spans health insurance barriers in wide-ranging areas of medicine, one aspect to which I have dedicated less attention is mental health. So, let’s dig in.

First, some context.

In 2008, Congress passed and President Bush signed into law the Mental Health Parity and Addiction Equity Act (MHPAEA), which required that health insurers’ provision of behavioral health benefits be on par with benefits afforded those seeking medical or surgical care. This parity is defined along the dimensions of quantitative treatment limitations as well as non-quantitative treatment limitations. The former are simpler to address; if you offer coverage for up to 20 physical therapy sessions (for example), you shouldn’t be more restrictive in your provision of coverage for psychotherapy sessions if that coverage is offered at all. That is, the MHPAEA didn’t compel the provision of those benefits, but specified that conditional on providing those benefits, they shouldn’t be inferior.

The non-quantitative treatment limitations are where things can get gnarlier, because among other things, it might require that utilization management not be more restrictive in the behavioral health space than it is in the medical or surgical space. But as you might imagine, that’s harder to enforce than assessing quantities of treatments covered.

The Affordable Care Act was the next game-changer for mental health care, requiring that behavioral health benefits be considered one of the 10 “essential health benefits” that would be included in covered plans.

So, by 2014 (when the ACA went into effect), plans were covering this type of care and it legally had to be on par with other benefits.

Sounds great, right? The coverage barriers were solved? Well, not quite…

There are a few core reasons why this legislation has not delivered on its promise of delivering needed relief to the 1 in 5 Americans struggling with mental illness in a given year. As I tell my students every semester, laws are only as good as their enforcement, and the MHPAEA suffers from weak enforcement and despite notably insufficient access to behavioral health care, few violations are investigated, let alone penalized. What’s more, the complexity and opacity of non-quantitative treatment limitations makes it very difficult to accurately assess whether a given health plan has violated the Act. Another thing I always tell my students: complexity and opacity are not friends to effective health reform or accountability. And to top it all off, there is a severe shortage of behavioral health providers, driven among other things by health insurers’ low reimbursement rates for these services.

The result of all of this is that a lot of patients end up falling through the cracks, and at a time when their brain may be telling them to give up rather than summoning the stamina to withstand red tape standing between them and their prescribed care.

In fact, in 2019, Bloomberg covered the tragic story of Max Tillitt, who had been inpatient for three weeks to recover form a heroin addiction and who seemed to be making progress. Despite his addiction specialist wanting him to remain in treatment at the facility for a while longer, United Behavioral Health declined to cover the longer stay. Ten weeks after his discharge, Max died of a drug overdose at the young age of 21.

It is thus little surprise that a number of the patients and families whom I interviewed for Coverage Denied were struggling to access behavioral health care for themselves or their children.

One Texas journalist reflected of the enduring struggles to secure mental health care for his son, often having to pay out-of-pocket for what they believed to be within the terms of their health plan, “We live frugally. One thing we postponed was retirement plan contributions. We withdrew 401(k) money early just to pay the bills. Now, my wife and I are approaching retirement age with little savings.”

Joanne, a mother of two in New York City, likewise suffered immense psychological and financial costs in the course of securing treatment for her transgender and severely depressed daughter Eli. “Medical denials are frustrating to appeal to start with, and appealing denied mental health claims is even more mind-boggling.” And notably, Joanne had a lot of advantages working in her favor: she has a master’s degree and her husband is a lawyer, she used to work for a large company in pharmaceutical and medical device sales so she understands the health care system, and she has a high-quality health insurance plan. Yet it still provoked years of struggle.

Eli was diagnosed with ADHD, anxiety, depression, OCD, and autism spectrum disorder. Though she had been seeing an outpatient therapist, when by the time Eli was in eighth grade, she was struggling with worse depression and increased difficulty regulating her emotions, despite having a good team of providers through NYU, and it became clear that she needed more care. Eli agreed to go to a short-term (up to 90-day) residential treatment facility when an intensive outpatient program failed to provide the needed relief.

Despite residential treatment being for a long duration by definition, the initial prior authorization that was secured was for just over one week, after which the treatment was reviewed through new prior authorizations “every couple of days.” Joanne reflected of this time, “We got approved for ten days the first time, then three days the next time, then seven days, then four days. You’re on a string because if the insurance doesn’t approve you that time, you’ve got about 24 hours to go and get your kid. It was horrible. You can’t make any plans because we need to be able to go get her if she’s not approved for more care. And they also know they can be yanked the next day. How does that help them?”

Joanne was lucky to be just a two-hour drive from the facility, but this was far from a given, and patients in this facility were from up and down the East Coast and beyond.

When Eli got denied because she was improving and was judged to no longer require this intensive level of care – it was no longer deemed medically necessary – she did a partial hospitalization program, but it was only three weeks long and over Zoom due to the COVID-19 pandemic. The result was that Eli had limited engagement with the program and at its conclusion, she struggled to attend and perform well in school, and she decompensated, even engaging in self-harm and struggling with suicidal ideation.

The team at the hospital through which they had been obtaining care decided that a more intensive, longer-term level of care was appropriate, and they ultimately found a 30-75-day program in California, which was covered (except for about $3,000 in out-of-pocket costs) but with new prior authorizations every few days.

Again, once Eli began to respond to treatment, continued care was denied as no longer medically necessary, despite the facility writing (in light of Eli’s recent decompensation), “If aftercare

plan [long-term residential treatment facility] is not followed, client’s prognosis is poor. Parents are unable to contain client, and it is likely that client will regress into old behaviors, which pose a serious risk to client and family safety. Client’s emotional dysregulation remains intense and creates severe disruption in client’s ability to function in daily life.”

The grounds for the denial of prior authorization was frustrating to Joanne. The letter read, “You are motivated for recovery and participating in your treatment. You are medically stable. You are taking your medications as prescribed and doing better.”

This was all true, of course, because Eli was benefiting from the structure of the program. And Joanne had seen Eli’s precipitous decline in the absence of that bolstered support.

She hired a consultant and a lawyer to assist with appealing. She cashed in her 401(k) and liquidated the inheritance that she otherwise would have gotten from her parents. She did everything he could. “We had no choice. It was an untenable situation for everyone, including Eli, to continue living the way we were living and walking on eggshells.”

Joanne and Eli are far from the only patients struggling to navigate this type of health care. And to be sure, there are points at which such a high (and costly) level of care is no longer clinically indicated. But to them, it felt deeply damaging to fail to appreciate the gravity of her condition outside the controlled environment, and the red tape and financial burdens that emerged in this setting often felt insurmountable, and would have been insurmountable if they had different jobs.

Clinical guidelines are important, but their deployment in this space highlight some key ways in which there is progress left to be made in realizing the promise of behavioral health parity.

To read more about other barriers that patients and mental health providers face in in the mental health space (or broader health care), read Coverage Denied.