In October 2017, Emma Goldrick felt her nose break beneath her teammate’s cleat in a college rugby game. As Goldrick got up from the ground, the fracture was immediately apparent. Her nose was crooked and bruises were already developing across her face. After examining her injury, her college’s athletic trainer recommended she see a doctor as soon as the swelling went down. Goldrick made an appointment for early December, more than a month out from the injury—the soonest she could be seen.

At that initial appointment, the doctor inserted a camera up Goldrick’s nose to examine her injuries (a routine procedure known as an endoscopy) and determined that she would need a septoplasty to keep her nasal airways from constantly collapsing. They scheduled the surgery for March, more than three months later—again, the earliest available opening.

While Goldrick waited for her surgery, she endured searing pain, interrupted sleep, and the inability to breathe through her nose.

Then Goldrick’s troubles began. When the endoscopy was mistakenly billed as a surgery, Goldrick was slapped with a $500 bill she couldn’t afford. For a month, she called back and forth to get the billing code changed so that her health insurance would cover it.

While Goldrick waited for her surgery, she endured searing pain, interrupted sleep, and the inability to breathe through her nose. The week before her surgery, her doctor’s office called: Goldrick’s insurance company had denied the surgery pre-certification. Goldrick’s doctor explained that nose surgeries are often denied because insurance companies fear people will attempt to disguise cosmetic surgery as medically necessary. If she wanted to proceed with the much-needed operation, she would have to pay tens of thousands of dollars out of pocket.

Eventually, at the advice of her doctor, Goldrick petitioned Grand Rounds, an organization that provides expert opinions to resolve insurance claims. More than eight months after the fracture, her insurance paid for her septoplasty. “This is still a success story,” Goldrick explains, grateful and optimistic despite her frustration. But she knows the outcome might be different if she hadn’t had a helpful doctor and the resources and time to complete the Grand Rounds process.

Measuring red tape

Emma Goldrick’s experience is a common one. Most people endure the frustrating bureaucracy of health care administration, but few research studies have documented the impact that such administrative red tape has on patients—until now. A recent study published in Health Services Research and conducted by researchers at Harvard University shows that administrative burdens can delay care as much as financial ones.

Study authors Michael Anne Kyle and Austin Frakt report that nearly three out of four people surveyed in 2019 had encountered a health-care related administrative task in the prior year, and one-quarter of the survey respondents had delayed or forgone care due to those administrative tasks.

What are “administrative tasks,” exactly? For this study, the authors looked at scheduling, obtaining information, prior authorizations/pre-certifications, resolving billing issues, and resolving premium problems (although, inevitably, much administrative work falls outside those buckets).

Administrative burden has been understudied, in part, because data are much less readily available. “You can look at costs through billing, but we had to conduct our own survey [on administrative burden],” explains Kyle. “Cost is so overwhelming that it dwarfs other barriers.” But as the study revealed, the frustrations of navigating the health care system are preventing people from accessing care.

An unequal burden

The burden of these administrative tasks is not shared equally. People who need and manage more care—such as people with chronic conditions or disabilities or women (who disproportionately access care on behalf of others as well as themselves)—tend to run into more administrative burdens simply because they are accessing more care. Indeed, disability status has the strongest association with administrative tasks and burden. And existing racial and socioeconomic inequities map onto administrative burden, leaving nonwhite and poorer people to navigate a complex system that was not designed to benefit them.

These findings have implications that play out on a human scale, costing people their health. Ethan, a 27-year-old disabled man who identifies as queer, had been trying to get a prescription refilled for nearly two months when I spoke to him. For three weeks, he’d been out of the “med of last resort” he’d been prescribed to treat a complex neurological condition. Four medications had failed to alleviate his symptoms before this one worked.

But in September 2021, he moved cities and changed jobs. He then had to find a new primary care physician under new insurance, as well as a new specialty pharmacy. Ethan knew this would be a hassle and began the process early, but the maze he had to navigate was even more convoluted than he anticipated.

He needed new prior authorization for the medication, which had to be initiated by his pharmacy. But before that, the doctor’s office needed to send the script to the pharmacy, which would run Ethan’s insurance to determine whether he needed prior authorization in the first place. And on and on. No action occurred without his prompting, so Ethan made dozens of phone calls over many weeks while working a full-time job.

Finally, he received a letter in the mail. His prior authorization was denied, even though this was a medication he’d previously had success with. Ethan had two options: pay for the expensive medication out of pocket or endure the lengthy, onerous process of filing an appeal.

Ethan had to track down and fax 5,000 pages of his medical records.

The symptoms of Ethan’s neurological disorder worsened while off his medication, and he relied on his wheelchair more, but he’s never been fitted for a custom chair. He’d started the evaluation and paperwork to prove medical necessity, but when he switched doctors, he was told he hadn’t provided enough information to authorize a wheelchair. Ethan had to track down and fax 5,000 pages of his medical records. The process remains stalled because two different hospital systems failed to transfer additional records.

Meanwhile, Ethan has been experiencing such severe back pain that he went to the doctor thinking he had a urinary tract infection. Instead, doctors attributed his pain to the incorrect fit of his current wheelchair.

Ethan says, “There’s this thought that if you have a disability and you need a thing—a walker or a wheelchair—obviously you have a disability, [so] just ask for it. It’s not that simple.” Limited financial and energy resources coupled with a need for more and specialized care means that even greater administrative burdens fall on people with disabilities. “At a certain point, you want to give up because you don’t know if it’s ever going to come to fruition,” he adds.

Some solutions

The Harvard researchers suggest two ways to leverage their research to create better, more effective health policy. First, says, Frakt, a simpler health insurance system should remove complexity. Kyle adds, “Someone like me should be able to schedule an appointment. I should be able to manage my own care; I have a lot of personal and social resources to navigate the system.” Yet even Kyle, a health policy expert, recently tried to book an appointment and hit a wall when she was put into a call center and they couldn’t find her insurance.

Booking an appointment is much harder for someone who doesn’t have Kyle’s resources and expertise. That’s why the second way to improve policy is by thinking about equity implications. It’s critical, says Kyle, that our systems alleviate the extra work that people with disabilities have to do. “Some of the populations that face particular barriers deserve special attention,” she says.

We have a long way to go in untangling the complexity of the U.S. health care system, but this research gives us a place to start in terms of identifying how to make care more accessible and creating evidence-based policies and more user-friendly administrative systems and practices.

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