In 2011, Rocky and Keith Schwartz's two teenage sons both started exhibiting symptoms of mental illness and substance abuse.
Seven years and many ordeals later, the Lebanon, N.J., family has spent more than $300,000 out of pocket for their sons' treatment due to coverage denials, first by UnitedHealthcare and later by Cigna, their insurers through Keith's job. They filed six appeals, losing every time.
In November, Rocky Schwartz testified about her experiences with insurers before the President's Commission on Combating Drug Addiction and the Opioid Crisis. She also has joined a New Jersey coalition that's working to toughen enforcement of the federal Mental Health Parity and Addiction Equity Act of 2008.
"It's so laborious to do these appeals when you're living with terrifying situations with your children," said Schwartz, whose sons currently are in stable condition. "It feels like they just try to wear you down until you won't fight any more."
In the midst of a national epidemic of drug addiction and overdose deaths, many families report similar battles with insurers in getting coverage for needed mental healthcare and/or addiction treatment.
This includes situations when patients at high risk of relapse were discharged from residential care over clinicians' objections because their insurer stopped paying, or when patients in acute withdrawal had to wait for their insurer to approve payment for medication-assisted treatment. Some patients reportedly have died due to delays in getting needed coverage and care. Insurers blame access problems on the national shortage of behavioral health professionals and a lack of reliable quality measures for behavioral health facilities.
Based on these experiences, providers, advocacy groups and some policymakers are pressing for stronger enforcement of federal and state parity laws. The laws require health plans to provide coverage for mental health and substance abuse treatment that's comparable to coverage for medical treatment.
But congressional Republicans and Democrats disagree about giving the federal government more enforcement power, even though Labor Department Secretary Alex Acosta, whose department oversees parity compliance, has repeatedly asked Congress for it.
Meanwhile, some observers say HHS has been sluggish in enforcing parity in its areas of responsibility, including Medicaid and the Children's Health Insurance Program.
Critics say insurers increasingly are using undocumented utilization review rules and procedures, known as non-quantitative treatment limitations, or NQTLs, to deny claims, and that the approval process for behavioral care is significantly more stringent than that for medical care.
These include limits on the scope or duration of benefits that are not explicitly stated in policy documents, such as guidelines regarding utilization review, medical management and provider network criteria, along with rules that patients must fail at lower levels of care before receiving more intensive care.
"We run into the problem that the days the insurer has approved for residential treatment have ended, and we'll want to prescribe an anti-craving medication before the patient leaves," said Michael Morrison, executive vice president of Preferred Family Health Care, a behavioral health and substance abuse treatment provider in Missouri and four other states. "But the insurer often won't make a decision until after the person is already discharged. It's a Catch-22, and our clients are the ones who suffer."
Advocates also want regulators to certify that health plans are in compliance with parity rules before they can be offered on the market. Only a handful of states currently conduct pre-market review for parity compliance. They say the current retrospective, complaint-driven regulatory model isn't effective.
"If there aren't complaints from the field, regulators think everything is fine," said Ellen Weber, vice president for health initiatives at the Legal Action Center, which is involved in a five-state campaign to strengthen parity enforcement. "But that's not true. The last thing that individuals in the middle of a mental health or substance abuse crisis want to do is challenge insurers' discriminatory barriers to care."
A Cigna spokesman said that while he couldn't discuss the Schwartz's case due to privacy rules, the company conducts ongoing oversight of its utilization management processes to ensure compliance with federal parity requirements. A UnitedHealthcare spokesman also said he couldn't comment due to privacy rules.
"I wish people could sit in my shoes for a week and see the efforts our plans make to ensure they understand and are complying with parity," said Pamela Greenberg, CEO of the Association for Behavioral Health and Wellness, which represents insurers providing behavioral health benefits. "But parity now means a lot more than what was initially meant in the law. It's not as easy as people think."
A spokeswoman for America's Health Insurance Plans said focusing on more aggressive enforcement ignores the problem of the national shortage of behavioral health professionals, which makes it difficult to ensure timely access to quality care.
The federal parity law, which was broadened and beefed up by the Affordable Care Act and the 21st Century Cures Act, gives federal and state regulators significant authority to enforce parity in private and public health insurance.
If it finds a parity violation in an individual case, the Labor Department's Employee Benefits Security Administration can require plans to pay all similar claims that were denied, known as a global correction. It also can force the plan to reform its policies and procedures.
The Labor Department in April reported to Congress that of the 136 citations issued in 2016 and 2017 for parity violations, about half were for NQTLs.
For instance, a California plan was cited for refusing to cover mental health and substance abuse services unless there was a written treatment plan for a condition that could be favorably changed. There was no comparable requirement for medical and surgical benefits. Regulators required the insurer to remove those provisions from 3,034 group plans with nearly 290,000 members.
The New York attorney general's office found in 2015 that two insurers, ValueOptions and Excellus Health Plan, denied behavioral health claims at least twice as often as other insurers did for medical or surgical claims. ValueOptions, which was renamed Beacon Health Options, was found to deny claims four times as often for addiction treatment.
A National Alliance on Mental Illness report released in November found that nearly 35% of privately insured mental health patients said they had difficulty finding any therapist who would accept their plan. Twenty-eight percent used an out-of-network mental health provider, compared with 7% who used an out-of-network medical provider.
Beefing up enforcement
In its April report, the Labor Department made clear that examining NQTLs to determine whether they meet parity requirements is a difficult, time-consuming task, especially given the limited resources. There are about 400 investigators and 100 benefits advisers to oversee more than 5 million health plans covering 143 million people.