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“This is the largest health disparity that no one is talking about.”

Recently, Briana Kelly was searching for a new psychiatrist to help her manage an eating disorder. The 30-year-old has employer-sponsored insurance, yet she still struggled to access the care she needed.

The problem, she told COURIER, is finding a provider in her network who could see her in a reasonable timeframe.

“The ones that are in network, you tend to have to wait a while, like several months out, for an appointment,” said Kelly, who lives in Conshohocken, Penn. A delay was far from ideal, she added, given her struggles adjusting to new medication.

Alternatively, she could have sought an out-of-network provider, but that would have cost her significantly more money. “I’ve had some psychiatrists who say, ‘Yeah, you can see me next week but it’s out of network’ and they charge $300 a session,” Kelly said.

Kelly’s dilemma—and the lack of in-network providers—isn’t an anomaly.

Americans seeking mental healthcare treatment turn to out-of-network providers at far higher rates than when seeking medical care, according to a recently updated study commissioned by the Mental Health Treatment and Research Institute LLC, a non-profit subsidiary of The Bowman Family Foundation.

Researchers found that patients are more than five times as likely to go out of network when seeking care at behavioral inpatient or outpatient facilities, compared to medical or surgical inpatient or outpatient facilities.

This disparity—which can drive up patient costs and limit access to care—is trending in the wrong direction, too.

“From 2013 to 2017, the disparity between how often behavioral inpatient facilities are utilized out of network relative to medical/surgical inpatient facilities has increased from 2.8 times more likely to 5.2 times more likely,” the authors wrote. “Over the same five years, the disparity for out-of-network use of behavioral outpatient facilities relative to medical/surgical outpatient facilities has increased from 3.0 times more likely to 5.7 times more likely.”

In other words, in the span of five years, the likelihood of mental health patients using inpatient or outpatient facilities not in their insurer’s network increased by 85 percent and 90 percent, respectively.

“For many people with mental illness, actually accessing the care they have is extraordinarily problematic.”

The study, which was originally published in 2017 but revised and re-released in November, was conducted by Milliman, an actuarial and consulting firm. Researchers analyzed 2016 and 2017 claims data from all 50 states and hundreds of preferred provider organization (PPO) health plans that insure 37 million people. 

The gap between medical and mental healthcare coverage in the United States is growing, even though a federal law aims to prevent such an outcome. Congress passed the Mental Health Parity and Addiction Equity Act (MHPAEA) in 2008, which was supposed to guarantee equal coverage of treatment for mental illness and addiction. The law mandates that insurance plans provide equal benefits and services for behavioral and medical inpatient and outpatient services, whether in-network or out-of-network. The law also requires insurance companies to reimburse mental health providers at the same rates as medical providers.

None of that has happened.

Instead, patients now find themselves being more than five times as likely to use an out-of-network provider when making a behavioral office visit than for medical or surgical primary care office visits. In 2017, 17.2 percent of behavioral office visits were to an out-of-network provider compared to only 3.2 percent for primary care providers and 4.3 percent for medical or surgical specialists.

“This is the largest health disparity that no one is talking about,” said Jennifer Snow, acting National Director of Advocacy and Public Policy for the National Alliance on Mental Illness

Poor mental health coverage from insurance companies is the reason why this gap exists, Snow said. 

“At the most basic levels, the mental health provider networks are really inadequate. It’s really hard for people to find a provider, let alone a provider that takes your insurance and is in network,” Snow said. “We really see that for many people with mental illness, actually accessing the care they have is extraordinarily problematic.”

Dr. Bruce Schwartz, president of the American Psychiatric Association, agreed.

“People who have paid for their healthcare coverage aren’t able to get behavioral health services within the networks that the insurance companies are offering,” Schwartz said. “They turn to their insurers who say they provide it and they try to find a doctor who’s listed in the directory to treat them, but the directories are inaccurate and contain a lot of people who are no longer taking patients or no longer accept that health insurance and people are just out of luck.”

Snow believes that this disparity is hindering the progress made by changing public attitudes in recent years. 

“We’re really seeing that the stigma around mental health is eroding. People are talking about mental health more often, but access to care remains a problem,” Snow said. “We’re hopeful as the stigma decreases, that it will result in more people seeking treatment … but if the care isn’t there for them to get it, we’re just as bad off as we were when people were not talking about mental illness and it was just whispered about behind closed doors.”

The high cost of care

In an analysis of in-network reimbursement rates, the Milliman report found that insurance companies reimburse behavioral health providers at a substantially lower rate than medical or surgical providers. 

As of 2017, primary care reimbursements for all office visits were 23.8 percent higher than behavioral reimbursements—up from 20.8 percent higher in 2015.

“They have discriminated against psychiatric treatment for many, many years,” Schwartz said. “I think the reason why many psychiatrists have ceased to participate with these insurance companies is that insurance companies, via their payments rates, have essentially been rationing health care.”

This discrimination pushes psychiatrists out of the network, Schwartz said, exacerbating the already existing problem of America’s psychiatrist shortage.

“If you don’t have enough doctors, then patients will go out of network, and the insurance company is less responsible for the cost of the care,” Schwartz said. 

Instead, the cost of care falls on patients. Visiting an out-of-network provider or facility means paying more out-of-pocket, or worse: foregoing care altogether.

“The patient ends up paying more. Despite having—on paper—mental health coverage, in practice, they don’t … and we know that cost affects whether or not people get needed medical care. The more a patient has to pay for treatment, the less likely they are to access potentially life-saving care,” Schwartz said. 

Kelly has found herself in that situation several times. “I’ve definitely foregone psychiatric appointments because I couldn’t afford it.”

She said she’s also witnessed others with worse insurance than she has be denied the care they need.

“When I was in an intensive outpatient program, I saw people who had coverage that wasn’t great and could only stay for a few days of treatment, when they really needed more time,” Kelly said. “And everybody knew it. The providers knew it and the patient knew it.”

According to the National Institute of Mental Health, only 43 percent of the 46.6 million American adults who lived with a mental illness in 2017 had received mental health services in the prior year.

The consequences of going without care can be severe, Snow said. “We know the detrimental things that can happen when people with mental illness can’t get the treatment they need. At the worst-case scenario, you have people who can wind up in jail or on the streets, or stuck in emergency rooms with greater pain and suffering.”

Another stark finding in the Milliman report focused on some of the most vulnerable members of society: children. In 2017, a child making a behavioral healthcare office visit was more than 10 times more likely to see an out-of-network provider than when making a primary care office visit. This was more than twice the disparity seen for adults, even though children’s behavioral healthcare providers receive better rates of reimbursement compared to their adult-focused counterparts.

The shortage of child psychiatrists is a key driver of this disparity, Snow said. There are more than 15 million children and adolescents who need the expertise of a psychiatrist, but only 8,300 providers specialize in offering care to this group, according to the American Academy of Child and Adolescent Psychiatry

“There aren’t enough child psychiatrists out there and it’s just the principles of economics — when there’s scarcity, those providers don’t have to go in-network … they have the ability to have a full book of patients who are just paying out of pocket,” Snow said.

How did we get here?

The Mental Health Parity and Addiction Equity Act was passed in 2008 with the intention of reversing these disparities. Interim regulations went into effect in 2010, but the final regulation implementing MHPAEA didn’t go into effect until 2014.

“Even though the law of the land was mental health parity, there were no regulations or rules to interpret the law, so we lost essentially six years of parity, because of the failure of the government to propagate regulations,” Schwartz explained. He believes this delay is partially responsible for the disparities we’re seeing today, because it meant there was no enforcement mechanism to regulate insurance companies. 

Insurers had plenty of time to prepare for the law and implement parity, but “they clearly chose not to, in large part I think for financial reasons,” Schwartz said. “Insurance companies don’t like to pay out money, and in this case, no one was looking, so they didn’t enforce parity.”

The parity law also falls short because of the way it was written and the way it’s enforced, Snow added. 

The federal government and the states are responsible for implementing MHPAEA, but it’s up to individuals to report concerns about their plan’s compliance with the law to the federal government or their State Department of Insurance. 

“It puts the onus on the individual patient to basically stand up and say, ‘My rights are being violated, you’re not covering this,’” Snow explained. “If you have ever had any kind of health issue, are you thinking about, ‘Let me just call my state insurance commissioner and ask them if my rights are being violated?’ I certainly am not focusing on that.”

Self-reporting, she added, is uncommon, therefore making it more difficult for regulators to take action.

While enforcement of the federal parity law remains spotty, several states have passed their own parity laws to promote equal coverage of mental health issues.

The strength of these laws, however, varies greatly. ParityTrack, a leadership coalition led by former Congressman Patrick Kennedy—the lead sponsor of the MHPAEA—grades each state on its parity laws. In 2018, only one state, Illinois, received a grade of A. Six other states earned a C, while 43 earned a D or an F for their parity laws. 

In June, Rep. Katie Porter (D-CA) introduced legislation aimed at strengthening parity in mental health and substance use disorder benefits, and Sens. Chris Murphy (D-CT) and Bill Cassidy (R-LA) introduced a companion bill in the Senate. Neither bill, however, has received a vote yet. 

While patients wait for legislative attempts to play out, Schwartz said he expects them to increasingly push for parity through another route: the courts.

“I think there will be more suits against insurance companies for essentially discriminating and misrepresenting their networks, the size of their networks, the composition of their networks, and that they are deliberately compensating, especially psychiatrists, less than other physicians,” Schwartz said. 

The stakes couldn’t be higher

Research shows that suicide is now the tenth leading cause of death in the nation—and the rate is increasing. Between 2000 to 2016, the suicide rate in the United States went up by 30 percent.

“I think that’s a direct result of the fact that mental health care in this country isn’t sufficiently available,” Schwartz said. “In this country, we have seriously underinvested in mental health care and we’re paying the price for it.” 

Studies show improving the quality of mental health care in the U.S. would also reduce the strain on the country’s medical system. The problem, as the Milliman report found, is that accessing care is increasingly difficult and expensive.

“People with mental illness are really getting the short end of the stick,” Snow said. “They’re waiting longer, they’re paying more, and they have fewer choices of providers. That’s just the sad reality of mental health in America.”

Kelly, the patient searching for a provider in her network, ultimately found one who could see her before the end of the year. It took six weeks to get an appointment.