‘Ghost networks' are harming patients, but attempts to eliminate them have fallen short

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The clock started ticking when Michelle Mazzola's son, Guy, was diagnosed with autism before his second birthday. Doctors told her the sooner Guy received therapy for his nonverbal communication and behavioral challenges, the better chance he had of reaching his full potential — and perhaps entering a kindergarten with neurotypical students.
Like many parents, Mazzola hoped to find therapists who were covered by their insurance. So she consulted a directory of providers listed as 'in-network' on her insurance company's website.
Mazzola spent two weeks calling providers on the list, but found no viable options.
'Probably 50% of the time no one answered the phone or the phone number was wrong,' she said. 'Then you would get people on the phone and they'd say, 'Yeah, we have about a nine-month wait list.''
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She had stumbled upon what's informally known as a 'ghost network' — a directory of providers that are largely unreachable, out of network or don't accept new patients. Studies suggest it's common to encounter these networks while looking for covered care.
By prolonging the search for a provider, ghost networks can delay patients' ability to get diagnosed and treated, or cause them to forgo care altogether. But regulatory efforts to force insurance companies to update their directories or penalize them for inaccurate provider information have fallen short, prompting some patients to turn to the courts.
A class action lawsuit filed last year on behalf of federal employees in New York against Anthem Blue Cross and Blue Shield claims the company's ghost networks amount to deceptive advertising by making people think they're purchasing insurance with an extensive list of in-network providers.
The suit further claims that inaccurate directories help insurance companies 'evade the costs' of covering people's care. It alleges that plaintiffs who could not rely on Anthem's directory were forced to use out-of-network doctors, saddling them with thousands of dollars in extra costs. In moving to dismiss the case, Anthem has argued that federal law pre-empts the plaintiffs from suing as members of the Federal Employees Health Benefits Program.
Mazzola, who lives in Connecticut and runs a construction company with her husband, is not a plaintiff in the suit. She estimated that she pays about $7,000 out of pocket each month for Guy's care, even after appealing denied claims and getting reimbursed for some out-of-network costs. She believes she wouldn't have to pay that sum if the providers in Anthem's directory were available.
'You take it at face value when you're buying a plan that this is what I'm getting,' Mazzola said. 'I would have gladly gone to any of those [in-network] providers if they actually were taking patients.'
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A spokesperson for Anthem Blue Cross and Blue Shield said the company meets access requirements outlined under state law.
'We also work hard to ensure that our provider directories are up-to-date and as accurate as possible, which requires a shared commitment from providers to update their information when there are any changes,' the spokesperson said.
Anthem said its provider network offers most of the services Guy needs, but due to the specialized nature of those services, it can be challenging to get appointments immediately. The company said it reviewed the list of providers that Mazzola tried to contact and found five errors related to incorrect phone numbers or addresses, which it said it will work with providers to fix.
NBC News reached out to 21 providers listed in Anthem's network, and found 20 either didn't take patients Guy's age or had no availability for months.
Another class action lawsuit filed in April on behalf of state and local employees in New York against Carelon Behavioral Health, which provides health care services through insurance plans, claims that ghost networks delayed plaintiffs' access to mental health treatment. Carelon said it does not comment on pending litigation.
The two class action suits are among the first to challenge insurance companies over ghost networks, said Steve Cohen, a lawyer at Pollock Cohen in New York who is representing the plaintiffs in both cases as well as Mazzola.
'Patients are in need of help,' Cohen said. 'They call provider after provider who are listed in this directory to get no answer, to be told it's not a doctor's office, to be told they don't accept the insurance. It's incredibly frustrating and often complicates getting medical care. It's dangerous.'
Mazzola's experience is familiar to many, regardless of their insurance plan or health issue.
'The vast majority of the time, a doctor's information is not going to be correct,' said Dr. Neel Butala, an assistant professor of medicine at the University of Colorado School of Medicine who co-founded a company that uses artificial intelligence to help large health plans improve provider data.
Butala reviewed physician directories from five large health insurers and found that 81% of entries had inconsistencies, such as address errors or the wrong specialty being listed for a physician. His findings were published in JAMA Network Open. A government review of Medicare Advantage plans found that the share of inaccurately listed provider locations ranged from nearly 5% to 93%, depending on the directory.
Ghost networks can pose a particular challenge to finding mental health providers, many of whom have long patient waitlists or have stopped taking insurance. After calling nearly 400 listed numbers for mental health providers in New York, the state attorney general's office found that 86% were ghost entries. Staffers on the Senate Finance Committee similarly contacted 120 mental health providers listed as in-network by Medicare Advantage plans, and found that ghost entries made up more than 80%.
'In my view, it's a breach of contract for insurance companies to sell their plan for thousands of dollars each month while their product is unusable, unusable due to a ghost network,' Sen. Ron Wyden, D-Ore., said at a Senate hearing on mental health access in 2023.
Anneliese Hanson, who was a network market manager at Cigna Behavioral Health until several years ago, said she felt pressure to make provider networks seem more robust to appeal to current or prospective members.
'If our target was to have 100 autism specialists within a certain [geographic area], we would be working towards meeting that target on paper, rather than actually checking and ensuring that there were 100 autism providers,' Hanson said.
A Cigna spokesperson said the company takes rigorous measures to ensure its directory is updated and accurate, and has a dedicated team of specialists to help patients access behavioral care quickly and conveniently.
In response to Hanson's comments, the spokesperson said: 'These untrue and inflammatory assertions have no basis in reality, neither back then nor today.'
Cohen said that federal and state standards require insurance companies to offer an ample number of in-network health care providers within a defined distance of the patient's home. Those requirements may encourage insurers to pad their directories, he said.
But Butala pushed back on that idea: 'I don't think there's any actually bad actors,' he said. 'I think everyone wants to get this right.'
Butala said there's an incentive for insurance companies to put out the right information, since a bad member experience could cause them to lose customers.
One explanation for ghost networks, he said, is that providers report doctors' information in a way that's conducive for billing, but isn't necessarily accessible to patients. Insurers often receive data that's difficult and time-intensive to comb through, he said.
'I think it's just a really hard problem to solve,' he said.
Mazzola said she and her husband, also named Guy, have been fortunate enough to afford their son's autism therapy so far. The younger Guy, now 2, is not speaking yet but has gotten better at making eye contact and using sign language to communicate words.
But the Mazzolas still feel the insurance system didn't work for them as promised.
'You pay for insurance your whole life, hoping [a diagnosis] never happens, but when it does, that you can put your head on the pillow at night knowing they're going to be there for you. And that just wasn't the case,' Guy Mazzola said.
Legal and medical experts say some protections against ghost networks exist, but aren't consistently enforced. Under the No Surprises Act, a federal law that took effect in January 2022, private health plans are required to verify and update their provider directories at least every 90 days. If a member receives out-of-network care because the directory information was inaccurate, insurance companies must reimburse them for any costs that exceed the in-network price.
Patients can also file complaints to state regulators, who have the authority to fine companies for directory errors. But a ProPublica investigation last year determined that such fines are rare. In an average year, fewer than a dozen fines are issued by insurance regulators for directory errors, the investigation found — and even then, the penalties are small.
One solution that might reduce the prevalence of ghost networks is a centralized directory of providers that all health plans could refer to. But health policy experts see that as a long-term goal that would be difficult to implement.
Butala said AI can help insurers scrub their directories for errors.
'I don't think health plans are skimping on throwing people at the problem,' he said. 'I think they've been throwing too many people at the problem, and now they realize maybe AI can actually make it better.'
But the Mazzolas also think insurance companies should be willing to pay more providers, so it's not a challenge to offer services in-network.
'I'm not anti-business. I'm not anti-profit, but there's an ethical side of it, too,' Michelle Mazzola said. 'Something needs to be done.'
This article was originally published on NBCNews.com