The Health Divide: Why a growing number of states are making follow-up cancer tests free for those who need it

Cancer screening is one of the quiet success stories of modern medicine. Mammograms, Pap smears and colonoscopies can detect cellular irregularities before they become cancer or catch it early, when it’s most treatable. 

The Affordable Care Act cemented the importance of these prevention tools by requiring most insurers to cover such screenings at no cost to patients.

But there’s been a catch.

When screening reveals an abnormality, people face bills — sometimes hundreds or thousands of dollars — for the follow-up tests needed to determine whether they actually have cancer. These costs can delay care, especially for low-income people and people of color. 

Now, a growing number of states and new federal guidance are taking steps to fix that.

This year, Oregon became the first state to eliminate out-of-pocket costs for follow-up tests after an abnormal screen for cervical cancer. And more than two dozen states have passed laws eliminating copays and deductibles for diagnostic breast imaging after a suspicious mammogram, according to the American Cancer Society. 

Many states have also eliminated patient cost sharing for colonoscopies following a problematic stool test. (Colonoscopies have been fully covered under the ACA only if they’re the initial screen, not follow-ups.) And recent laws in New York and Maryland eliminate out-of-pocket costs for follow-up tests for lung cancer. 

These laws are in keeping with changes in federal health guidance on cancer prevention, which are redefining screening to include the battery of tests that lead to a diagnosis, or rule one out. 

“It’s great — this recognition that screening is not one test,” said Katie McMahon, policy principal for prevention for the American Cancer Society Cancer Action Network, the organization’s advocacy arm.

Cancer diagnostics may not command the dramatic headlines that drug breakthroughs or hospital closures do. But these policy shifts sit at the intersection of access, affordability and equity, arguably the most pressing issues in health care today. 

And free follow-up testing can make a huge difference for people. Even a four-week delay in treatment is associated with a higher risk of death for major cancers, including breast, lung, colon and cervix.

“Prevention only works when people can access every step of care, not just the first screening,” State Rep. Annessa Hartman testified to her legislative colleagues in Oregon in January in support of the cervical cancer bill. 

Hartman, 37, was undergoing treatment for Stage 3 cervical cancer at the time. Since going public with her diagnosis, she said she has heard from dozens of women who had abnormal cervical cancer screening tests but didn’t follow up because of the expenses involved.

She told the story of a single mother of three who needed a colposcopy, an examination of the cervix with a magnifying instrument, often accompanied by a biopsy. But the woman could not afford the out-of-pocket cost of $1,000. 

“Screening without affordable follow-up is not prevention,” Hartman said.

For low-income women and Black women especially, such expenses can be roadblocks to urgently needed care. 

Black women are less likely to receive follow-up care after an abnormal Pap test, and they are 41% more likely to develop cervical cancer and 75% more likely to die from it than white women.

The story is similar for breast cancer. Some 86% of Black women were up to date on mammograms, the highest of any racial group, according to 2023 data from the breast cancer nonprofit Susan G. Komen. And Black women develop breast cancer at lower rates than white women. But their death rate is 38% higher, largely because Black women are diagnosed later and have less access to high-quality treatment, researchers say.

State laws like Oregon’s matter because they make no-cost follow-up coverage an explicit requirement  of state-regulated health plans, such as plans sold on the ACA’s individual and small group markets. 

The laws also send a public message about the importance of timely, comprehensive cancer testing. And the state laws remain in force even if federal policy changes.

Federal health guidance is important because it influences ACA coverage rules, which affect most large employer-based health plans and the millions of people who rely on them.

Expanded coverage for diagnostics is too recent to evaluate whether it improves cancer outcomes or translates into earlier diagnosis. Two published studies of whether people were likelier to get timely follow-up colonoscopies if they were free showed mixed results. One study, by a company that makes cancer diagnostic tools, found an “immediate and sustained” increase after copays and deductibles were dropped for people on Medicare.

The other study compared two states that eliminated out-of-pocket costs — Kentucky, in 2016, and Oregon, in 2017 — with neighboring states where patients still had to pay for the procedure.

The researchers found the policy change was associated with an increase in colon cancer screening overall in Oregon. But the odds of getting a follow-up colonoscopy were not significantly different in Oregon or Kentucky than in their neighbors.

The researchers concluded that eliminating the costs is one of many changes needed to make sure that people get the diagnostic tests they need. Improving health literacy, outreach, transportation and access to care are also important.

Nevertheless, expanded insurance protections for cancer prevention and early detection are a long-overdue step forward. It may seem too incremental and technical for a news story. But at a moment when access to health care is shrinking — as Medicaid cuts loom, Planned Parenthood clinics close, and skyrocketing Affordable Care Act marketplace premiums push more than 1 million people to drop coverage — it’s a public service to let people know when financial barriers to potentially lifesaving tests fall away.