The unexpected costs of “free” preventive care

Abstract

Stool-based colorectal cancer tests, boosted by their noninvasive nature and the federal requirement that they be covered at no cost to insured patients as a free preventive screen, have surged in popularity. Until recently, however, a positive test result could prompt a surprise bill for a follow-up colonoscopy—one of many examples of how the promise of widely accessible cancer screening still faces substantial hurdles.

In 2010, the Affordable Care Act heralded a major shift in how preventive care is handled in the United States. Among its many provisions, the act requires private insurers to fully cover, at no cost to consumers, preventive services endorsed by one of three groups: the Advisory Committee on Immunization Practices, the Health Resources and Services Administration, or the US Preventive Services Task Force (USPSTF).

To date, the law has made screening for colorectal, cervical, breast, and lung cancers—all of which have received an A or B rating from the USPSTF—freely available for eligible individuals. In practice, health policy experts such as Mark Fendrick, MD, director of the University of Michigan’s Center for Value-Based Insurance Design in Ann Arbor, have noted that “free” is not always free for what is more often a screening continuum than a single test. In one case, he learned about a patient who had to pay more than $1000 for a follow-up colonoscopy after a positive stool-based DNA test. “I blew a gasket,” says Dr Fendrick, who helped to write the Affordable Care Act’s preventive services provision.

If a gastroenterologist removed a polyp during a colonoscopy, some medical institutions also changed the billing code from a preventive screen to a therapeutic intervention; this switch was dubbed the “post polypectomy surprise.” Such recoding defeats the whole point of preventive care, says Paul Shafer, PhD, an assistant professor of health law, policy, and management at the Boston University School of Public Health in Massachusetts. “If they cut polyps out, great—that’s a good thing,” he says. “I don’t think that we should be penalizing the patient for doing the thing that we’ve tried to incentivize them to do through this policy.”

To better understand the magnitude of the problem, Dr Fendrick and his collaborators assessed how often and how much patients paid after receiving a positive test result for each of the four cancers in the USPSTF screening recommendations and how those costs were changing over time. For all four, they documented some surprisingly common charges.

In a 2021 JAMA Network Open study of 88,000 patients, Dr Fendrick and his colleagues found that among the more than 1 in 6 who had a stool-based test and underwent a follow-up colonoscopy within 6 months, nearly half with commercial insurance incurred out-of-pocket costs.¹ For Medicare patients, more than three quarters had to pay out of pocket. A similar study found that after an initial mammography screening, commercially insured women between the ages of 40 and 64 years commonly incurred “nontrivial” out-of-pocket costs for additional breast imaging evaluations and procedures and that their costs were increasing over time.²

Testing positive during a cancer screen is a “horrible, horrible time,” Dr Fendrick says. “Not only are you fearful that you may have cancer, but then you have to get stuck with a non-trivial amount out of pocket depending on who you are and what insurance you have.”

Considerable variability in how preventive services are implemented across the United States has contributed to other surprise costs. A 2021 study by Dr Shafer and a colleague at Boston University estimated that patients were being charged anywhere from $75.6 million to $219 million annually for preventive care that should have been covered for free by their health insurers but was not.³ Dr Shafer notes that the study looked purely at services that were supposed to be free, not at any follow-up tests. “If you actually considered the cost of follow-up, our estimate would be considerably higher,” he says.

The key problem, Dr Shafer says, is that the Affordable Care Act specifies which services must be covered at no cost, but each insurer and each insurance plan then decide how to put that requirement into practice and which diagnosis codes and Current Procedural Terminology (CPT) codes to use. “You have a lot of different patients under lots of different commercial health plans that all have slightly different guidelines for how these need to be billed to be free to the patient,” he says. “Not surprisingly, sometimes things fall through the cracks.”

All too often, the patient is left trying to fi gure out the billing guidelines and what preventive services should be covered. “Most people can’t do that—it’s too complicated and so they feel frustrated,” Dr Shafer says. “They feel like they were lied to, that the policy is a false promise, which could have implications for the future use of preventive care and their trust with their provider and their insurance company.”

How the unexpected out-of-pocket expenses are influencing consumers’ behavior is a critical next question, he says. As for a potential solution, he adds, he Centers for Medicare & Medicaid Services could issue a standardized list of CPT codes and diagnosis codes for all the covered preventive services to avoid future coding and billing confusion and ambiguity.

Her foundation provides free case management services, and a signifi cant fraction of its work involves helping patients to fi nd services for which they already qualify but which were never mentioned by insurers or providers, often because of error or confusion over the rules. “You have to have an advanced degree sometimes to be able to understand this,” says Donovan. “The major takeaway is that, unfortunately, you can’t assume that something will be free. Always call and ask.”

When health providers or insurers make mistakes, she adds, patients often do not push back, but they should, as approximately half of her foundation’s billing appeals succeed. The need for an appeal is so common that the foundation’s website includes template form letters that patients can use to make their case. “We are an organization that fervently wishes we didn’t exist,” Donovan says.

The future of preventive care could be further complicated by Braidwood v. Becerra, a case before the US Supreme Court. At its heart, the case has challenged the procedural authority of the USPSTF as a nongovernmental entity, and dozens of the taskforce’s new and updated recommendations since 2010 could be nullifi ed. If the plaintiffs win, Dr Shafer fears that smaller insurance plans might be free to pick and choose what they want to cover at no cost to consumers, consequently setting back the goals of preventive care and early disease detection.

In the meantime, Dr Fendrick and other advocates are trying to close the cancer screening coverage gap, or “cancer screening purgatory,” as he calls it. In 2022, the Biden administration issued new guidance that a colonoscopy performed as a follow-up to an at-home test was still a necessary part of preventive screening and therefore had to be covered in full by private insurers with no copays or deductibles. Other federal guidelines have clarifi ed that commercial plans cannot impose cost-sharing for a polyp removed during a screening colonoscopy. The success so far, Dr Fendrick says, could be a good template for closing the gaps for breast, cervical, and lung cancer screening as well.

In 2023, the American Cancer Society, which publishes Cancer Cytopathology, released a position statement strongly advocating for the elimination of patient cost-sharing for cancer screening and any necessary follow-up testing.⁴ Dr Fendrick is hopeful that the combined efforts will help to close the remaining coverage gaps. “I tend to be a little bit overoptimistic in general as a person, but I really do believe that rational minds will prevail on this policy,” he says.