After overdosing 19 times, William Head Williams was finally ready to enter a detoxification program for his heroin addiction.
But he was turned away from a New York hospital after his insurer deemed his admission not medically necessary, said his father, Bill Williams, who drove him there Oct. 16, 2012.
"They rejected him in about 20 minutes," Bill Williams said.
Two hours later, his son overdosed in a coffee shop and again a few days later, his parents said. After about six weeks in a coma, the troubled but once-promising 23-year-old stock trader died. His parents believe he would have been admitted without "prior authorization" if he had been bleeding to death.
Under state and federal laws, insurers are required to offer equal coverage for mental health and medical conditions. It's what mental health and substance abuse advocates call parity. A patient's access and costs should be no different if they are seeking mental health care than if they were in need of medical care.
On Wednesday, the National Alliance on Mental Illness released a report that found several barriers to mental health treatment, based on a survey of 2,720 people with mental illness or their families and an analysis of 84 insurance plans in 15 states, including Maryland.
Barriers to care
Survey respondents said it was harder to find a mental health care provider than a medical one, and much harder to access inpatient care. A third of respondents said their mental health or substance abuse care was deemed not medically necessary — twice as many as were denied medical care by their insurers. And more respondents said out-of-pocket costs for mental health care were more of a barrier than they were for medical care.
"Despite the federal and state parity laws, discrimination still exists toward mental health and substance use conditions," Mary Giliberti, the group's executive director, said in a statement.
The report also found a lack of information on mental health benefits for consumers buying plans.
Insurers once routinely charged more for behavioral health or placed limits on care, believing the patients were more expensive, said Dominic Hodgkin, a researcher at Brandeis University's Heller School for Social Policy and Management. But he expects new research being conducted by his school will find far less disparity.
A 2013 study conducted for the U.S. Department of Health and Human Services found a high level of parity in co-pays and other financial benefits in employer plans.
"Progress is being made," Giliberti said, "but there is still a long road ahead."
Researchers are finding it hard to tell, for example, if policies charge the same co-pays to see a medical doctor as a psychiatrist. It's even harder to tell if other limitations such as prior authorization for services are the same.
A new study by researchers at the Johns Hopkins University suggests a quarter of insurance plans offered last year on health exchanges created under the Affordable Care Act may be offering better coverage for medical services than for mental health.
University of Maryland researchers found similar disparities on the exchange in Maryland, which passed parity legislation in 1993, 15 years ahead of the federal law.
People buying plans usually don't see all the policies' fine print before picking one, so researchers at both schools couldn't say whether insurers were breaking parity laws or simply confusing consumers with marketing materials.
"Consumers are at a complete and tremendous disadvantage," said Ellen Weber, the University of Maryland law professor who headed the study of the state exchange. "Only when you begin to access your plans do you truly understand what's covered and not covered."
State insurance regulators said they examine the plans, not the marketing materials, which may not adequately reflect the plans.
Insurers also say the summaries don't tell the whole story. For example, Evergreen Health Co-op, which sells plans on and off the Maryland exchange, has a clinical social worker at all of its primary care offices. But there is no place to mention it in its exchange marketing materials, which are governed by the federal health reform law.
"Providing our members with access to mental health care has, from the very beginning, been a top priority for us at Evergreen Health," said Dr. Peter Beilenson, who founded the co-op.
If a state insurance regulator "determines a plan does not meet mental health parity laws and regulations," he said, "the plan is returned to the carrier and not approved for sale until the carrier amends the plan to meet the requirements."
A spokesman for CareFirst BlueCross BlueShield, which sells plans in Maryland, Virginia and Washington, also said all of the plans offered by the insurer, on and off the exchanges, were vetted by regulators and comply with the law.
A tangle of federal and state agencies oversee insurance plans. States regulate Medicaid, while the U.S. Department of Labor supervises plans offered by large companies that self-insure. The Maryland Insurance Administration oversees a third of plans sold in the state, including small-business and individual policies sold on and off the exchange, and large-business plans bought in-state.
While the administration reviews the plans overall, it doesn't examine all the criteria that go into specific coverage, said Brenda Wilson, the MIA's associate commissioner for life and health.
She couldn't say how often a problem comes up. When there is a complaint, she said, independent experts perform a review.
"This is how we can protect citizens if there is a complaint," Wilson said. "If there is bogus criteria, we can go in and look at it."
Carol McDaid, a spokeswoman for the advocacy group Parity Implementation Coalition, said information about parity issues, such as how prior authorization is considered, can be difficult to access or understand.
"Even people relatively well-versed in health insurance don't understand the wording in their plan," she said. "And your ability to be fluent in what's in your health plan is very limited by what they provide in plan documents."
A bill that's made little headway in this year's General Assembly session could shed some light on the issue by requiring insurers to analyze their plans annually to make sure they fulfill parity requirements, and to share that analysis with regulators and the public.
Wilson said confused consumers can seek guidance from insurance companies, brokers or agents. On the exchange, navigators help with enrollment.
Colleen Barry, associate chair for research in the department of health policy and management at Hopkins' Bloomberg School of Public Health, said consumers who are confused by one plan's marketing materials might just move on to another — possibly what insurers want.
Studying exchanges in two states during open enrollment last year, she found disparities between medical and mental health coverage in a quarter of plan summaries.
"I did what a consumer would do," said Barry, who published her findings in the journal Psychiatric Services. "Did the mental health benefit look the same? Was it equitable? We found in a not-insignificant number of cases it wasn't."
She did not name the states she studied, but after finding so many problems, she plans to study policies in all 50 states.
Adrienne Ellis, director of the Parity Project at the Mental Health Association of Maryland, which has been pushing for improved access to mental health care providers, said the system of ensuring parity relies too heavily on complaints. She said few consumers recognize disparity, or know whom to contact among the federal and state regulators.
"You don't have all the information or expertise and you're in crisis," she said. "You don't have the time or wherewithal to file an insurance complaint."
Williams' parents did not. They've now filed a $300 million lawsuit in New York County Supreme Court against the insurers, who they allege wrongfully denied benefits due their son.
"If someone wants help, it has to be now," said Margot Head of addicts like her son. "If doctors say they could die without treatment, it needs to be provided, just like if they were bleeding to death."