This story is part of a partnership with Scripps News.
In North Carolina, lawmakers outraged that breast cancer patients are being denied reconstructive procedures have passed a measure to force health insurers to pay for them. In Arizona, lawmakers intervened to protect diabetes patients, requiring health plans to cover their supplies. Elected officials in more than a dozen states, from Oklahoma to California, have written laws requiring insurance companies to pay for emergency services.
Over the past four decades, states have passed hundreds of laws that spell out exactly what insurers must cover so consumers aren’t driven into debt or forced to go without drugs or procedures. But health plans have violated these mandates at least a dozen times over the past five years, ProPublica found.
In the most extreme cases, patients are denied coverage for life-saving care. On Wednesday, a ProPublica investigation revealed how a Michigan company would not pay for an FDA-approved cancer drug for the patient, Forrest VanPatten, even though state law requires insurers to cover the cancer drugs. That expensive treatment offered VanPatten’s only chance for survival. The father-of-two died at the age of 50, still fighting with his insurer to access the therapy. Regulators never intervened.
These laws do not apply to every type of health plan, but they should provide protection to tens of millions of people. AHIP, the trade group formerly known as America’s Health Insurance Plans, said the new mandates are costly for consumers and states, tie the hands of insurers and limit plan innovation by requiring specific benefits. Still, its members are taking steps to make sure they comply with these mandates, the trade group said.
State insurance departments are responsible for enforcing these laws, but many are ill-equipped to do so, researchers, consumer advocates and even some regulators say. These agencies oversee all types of insurance, including plans that cover autos, homes, and people’s health. However, last year they employed fewer people than a decade ago. Their first priority is to ensure that the schemes remain solvent; consumer protection against illegal rejections often takes a back seat.
They simply don’t have the resources to do the kind of review we would need, said Sarah McMenamin, an associate professor of public health at the University of California, San Diego, who studies the implementation of state mandates.
Agencies often do not investigate health insurance denials unless policyholders or their families complain. But denials can come at the worst moments of people’s lives, when they don’t have enough energy to fight the bureaucracy. People with plans purchased on HealthCare.gov complained less than 1% of the time, one study found.
ProPublica surveyed every state insurance agency and identified just 45 enforcement actions since 2018 involving denials that violated coverage mandates. Regulators sometimes treat consumer complaints as one-offs, forcing an insurer to pay for an individual’s treatment without addressing whether a wider group has faced similar wrongful denials.
When regulators decided to dig deeper, they found that one complaint was emblematic of a systemic problem affecting thousands of people.
In 2017, a woman complained to Maine’s insurance regulator, saying her carrier, Aetna, violated state law by improperly processing claims and overcharging her for services related to the birth of her child. After being contacted by the state, Aetna admitted the error and issued a refund.
That winter, the woman gave birth to her second child, and Aetna did it again. She filed another complaint. This time, when the state forced Aetna to pay, it also demanded broader data on childbirth claims. Regulators found the insurer miscalculated claims related to more than 1,000 births over a four-year period. Aetna issued refunds totaling $1.6 million and agreed to pay a $150,000 penalty if it does not comply with the terms of the consent agreement.
It was a rare victory. The potential fine, however, represented less than 0.002% of the $6.63 billion in profit Aetnas’ parent company, CVS Health, posted that year.
Aetna spokesman Alex Kepnes said the company resolved the issue in 2019 to the state’s satisfaction. Kepnes declined to answer why the insurer failed to fix the problem after the first complaint.
Patients often do not know what care they are entitled to under state mandates. And one survey found that 86% of people with health insurance don’t know which government agency to call for help. Knowing how to navigate the system can make all the difference for patients with huge medical bills.
In December 2022, Samantha Slabik felt a sudden sharp pain in the lower right part of her abdomen. The San Marcos, Texas, resident drove to the emergency room, but after a CT scan revealed she had appendicitis, doctors sent her by ambulance to a nearby hospital. Everyone pointed out that this is an emergency situation that needs to be solved urgently, Slabik said.
Texas has long had a law requiring insurers to cover medical treatment needed by patients in emergencies. However, that month, her insurer, Ambetter, wrote in a letter that it would not pay the $93,000 bill because the appendectomy was performed at an out-of-network facility.
Slabik studied to become a physician’s assistant and was an emergency medical technician. Her fiance’s brother-in-law worked in medical billing and gave her advice on how to quit, as did her mom, whose cancer diagnosis meant she often interacted with health insurers. These connections and experiences have given Slabik an unusual understanding of her rights and how the system works. Yet every time she reached someone in Ambetter, she felt like she was buried. Slabik felt lost.
By June, she was so fed up that she decided to file a complaint with the Texas Department of Insurance. Five days later, she received a call from an Ambetter employee who apologized and said he would process the procedure as an emergency and pay.
Centene, Ambetters’ parent company, did not respond to emailed questions or a phone call seeking comment. (The state informed Slabik that it had closed the appeal.)
I was around a lot of knowledgeable people who gave me very good advice, Slabik said. And so if you’re just like, alone, you’re not in the health care system at all, I mean, I just, I can totally see you giving up.
California had to pass not one but two laws to force insurers to pay for fertility treatments. And one MP said insurers were still not speaking up often enough to consider introducing a third.
After lawmakers began requiring such coverage in 1990, some health plans took a narrow view. They have refused to pay to preserve eggs, sperm or reproductive tissue for patients facing treatments for diseases such as cancer that could threaten their fertility. Some patients delayed chemotherapy to try to get pregnant early or went into debt to pay for treatments out of pocket. Regulators have forced insurers to pay in some cases, but elected officials are concerned that other patients have been denied this care.
State Senator Anthony Portantino worked with colleagues to amend the law in 2019, clarifying that these treatments must be covered. Despite this, insurers are putting up roadblocks.
Some of the insurers are taking a very strict approach that it has to be chemotherapy, said Portantino, who is a Democrat. For example, patients requiring cancer operations that could leave them infertile faced rejection.
Portantino said he plans to work with California’s largest health insurance regulator to clarify that fertility preservation must be covered more broadly. If that doesn’t work, he said he will turn to the legislature once again.
Other regulators are trying to boost enforcement on the front end. Health insurers submit annual filings to the states in which they operate, detailing the treatments and services the company will and will not cover. Regulators review these policies to determine whether the insurer is complying with government mandates. In Vermont, the insurance department is using federal grant money to work with an outside company to improve these reviews. Through staff training and education, the department hopes to catch insurers who don’t follow state laws before Vermonters face wrongful denials.
Not all health plans have to follow state mandates. About 65 percent of employees who are insured through work work in companies that directly pay for health care. These companies often hire insurers just to process claims. Known as self-funded plans, they are regulated by the federal government and are exempt from state coverage requirements. Employers are increasingly turning to these types of plans, which tend to be less expensive, in part because they don’t have to cover state-mandated care. (The federal government also imposes coverage mandates, but state laws can be stricter.)
For patients, this may mean less protection against rejection.
When 57-year-old Sayeh Peterson, a non-smoker, was diagnosed with stage 4 lung cancer, her doctors ordered genetic testing to identify the cause. Those tests revealed that a rare gene mutation was, in fact, the culprit in Peterson’s disease and gave doctors the information they needed to create a treatment that targeted the mutation. Her state, Arizona, requires insurers to cover such testing, but Peterson’s UnitedHealthcare plan was self-funded by her husband’s employer, so the law did not apply. She and her husband were left with more than $12,000 in their accounts.
In response to questions, UnitedHealth spokeswoman Maria Gordon Schidlo wrote that there is not enough medical evidence to support the use of all those tests.
As Peterson undergoes a treatment plan tailored to the results of the genetic test, she continues to complain about the rejections months later. We were told we had excellent insurance, Peterson said. But then they deny coverage for the test that determined what my treatment would be. How do you even manage this?
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