Jane Doe – her real name being hidden to protect her young child – thought she knew how to help her eight-year-old son “”Baby Doe.” She was well-educated, employed in a professional role by a federal agency, and comfortable navigating bureaucracies and unresponsive gatekeepers. More importantly, she was a fierce advocate for her child, who had been diagnosed with an autism spectrum disorder and needed occupational and speech therapies, which he received, and mental health care, which he did not.

The problem was that despite living in the suburbs of New York City, which enjoys an abundance of qualified mental health professionals, none of them would accept Jane’s health insurance. If she wanted her child to see these doctors, she would have to pay thousands of dollars a month, and her insurance would only reimburse her a small fraction of that cost. That’s because these doctors were all out of network.

Jane’s frustration and anxiety were matched by her anger because all of the doctors she called were listed in her insurance company’s directory as being in network. The company listed these as accepting her insurance, which meant she should have had to pay only a $30 co-pay each time her child needed care. Yet the dozens of doctors she called either didn’t accept the insurance, didn’t exist, or weren’t actually psychiatrists. Fully 93 percent of the listings were erroneous.

Jane had encountered what is an extraordinarily common practice among health insurance companies: ghost networks. The prevalence of grossly inaccurate provider directories is staggering. A study conducted by the Office of the New York State Attorney General in 2023 found that of the 13 largest health insurance companies selling plans in New York, every one of them published doctor directories that were grossly inaccurate. The best directory was only accurate in 35 percent of its listings. One plan had an accuracy rate of 0 percent, and all of the others ranked between 5 and 20 percent correct, with most hovering in the single digits.

The problem of ghost networks is not confined to New York State. The U.S. Senate subcommittee on commerce held hearings in 2023 and found that ghost networks are a nationwide problem. Nor is the problem limited to mental health providers. The practice and problem cross many medical specialties, and the impact on people’s lives is serious.

Many people affected by ghost networks report spending scores of hours calling doctors listed in the directories, getting more and more frustrated and anxious, exacerbating their condition as care is delayed. Most patients interviewed report calling telephone numbers listed in the directories only to encounter wrong numbers or out-of-service numbers. The inaccuracies are the rule, not the exception. Many patients also report calling their insurance company to report the inaccuracies of the online directory and to ask a customer service representative for up-to-date listings – only to find that those recommended doctors, too, don’t accept the insurance.

The damage and injury go beyond money – though the financial impact is often severe. Out-of-network mental health providers often charge hundreds of dollars per visit, and most plans reimburse members only a small fraction of their out-of-pocket cost. For patients like Jane’s child, who needs to see doctors several times a month, the unreimbursed cost can soar into the thousands of dollars. And significantly, those who have the means – or sacrifice other things to afford care – are the lucky ones. A significant portion of patients report simply giving up: abandoning their search for doctors whom they can afford.

To compound the problem and frustration, when Jane (and dozens of other people we interviewed) actually found an in-network doctor, they often heard that the doctor wasn’t accepting new patients. Or if they were, there was a six-month waiting list for an appointment.

Jane did something most people are afraid to do. She agreed to be a representative plaintiff in a class-action lawsuit. Her goal is twofold: first, to get the insurance company to clean up its act and publish accurate, up-to-date provider directories. Second, to be reimbursed for the thousands of dollars she has spent on out-of-network doctors caring for her child, and for the thousands of other people similarly affected. Jane’s willingness to step forward is brave because she is not only concerned about a loss of privacy but also about retaliation by the insurance company.

Sadly, there is one group of patients who cannot be compensated through a class-action lawsuit: people who, out of frustration or the barrier of high out-of-pocket costs, abandon their search for care. Such people cannot be part of a class action because the harm they experienced is considered too “individualized.” Legal rules and precedent require “commonality” of damages, and someone who suffers from depression and cannot work is considered different from a person who is anxious and cannot work. And, not surprisingly, these terribly impacted people typically cannot afford to bring a lawsuit on their own: the cost of legal fees would dwarf their recovered damages. Few (if any) lawyers would take such a case on contingency because their share of the award wouldn’t come close to their actual costs. Thus, the power and economics of class-action suits.

Jane Doe is very gutsy, and she is not wrong about the potential loss of privacy and possible retaliation. Just yesterday, the defense lawyers’ very first communication with Jane’s legal team demanded that they identify Jane and Baby Doe.

Steve Cohen is an attorney and can be reached on LinkedIn. Steve’s practice epitomizes the intersection of law, policy, and journalism—with the realities of politics thrown in for good measure. For 35 years before going to law school, Steve was a successful publishing executive—including at Time and Scholastic—best-selling author and CEO of three internet start-ups. Since teaming up with Adam Pollock in 2018, he has learned to bring that unusual background, diversity of experience, and skills to the law.