Preventive exams like mammograms can be free, but follow-up tests can incur big bills.

When Cynthia Johnson learned that she owed $200 out of pocket for a diagnostic mammogram in Houston, she nearly put off taking the test she told her she had. breast cancer.

“I thought, ‘I don’t really have this to spend, and it’s probably nothing,'” said Johnson, who works in educational assessment at a university. But she decided to go ahead with the test because she could put the copayment on a credit card.

Johnson was 39 years old in 2018 when her mammogram confirmed that the lump she noticed in her left breast was cancer. Today, after a mastectomy, chemotherapy and radiation therapy, she is disease-free.

Having to choose between paying rent and having the necessary tests can be a serious dilemma for some patients. Under the Affordable Care Act, many preventive services — such as breast and colorectal cancer screening — are covered at no cost. This means that patients do not have to pay the normal copayments, coinsurance or deductible costs that their plan requires. But if a screening returns an abnormal result and a healthcare professional orders more tests to find out what is wrong, patients can be on the hook for hundreds or even thousands of dollars for diagnostic services.

Many patient advocates and medical experts say no-cost coverage should be extended beyond an initial preventive test to imaging, biopsies or other services needed to diagnose a problem.

“The billing distinction between screening and diagnostic testing is a technical one,” said Dr. A. Mark Fendrick, director of the Center for Value-Based Insurance Design at the University of Michigan. “The federal government should clarify that commercial plans and Medicare must fully cover all steps necessary to diagnose cancer or another problem, not just the first screening test.”

A study that examined more than 6 million commercial insurance claims for screening mammograms from 2010 to 2017 found that 16% required additional imaging or other procedures. Half of the women who had more images and a biopsy paid $152 or more in direct costs for follow-up exams in 2017, according to the study by Fendrick and several colleagues and published by JAMA Network Open.

People who needed tests after other cancer screenings also piled up charges: half paid $155 or more for a biopsy after a suspicious result on a cervical cancer test; $100 was the average bill for a colonoscopy after a stool-based colorectal cancer test; and $424, on average, was charged for follow-up exams after a CT scan to check for lung cancer, according to additional research by Fendrick and others.

Van Vorhis, of Apple Valley, Minnesota, had an at-home stool test for colorectal cancer two years ago. When the test came back positive, the 65-year-old retired attorney needed a follow-up colonoscopy to determine if anything serious was wrong.

The colonoscopy was normal: It found a few benign polyps, or clumps of cells, that the doctor cut out during the procedure. But Vorhis was devastated by the $7,000 he owed under his individual health plan. His first colonoscopy, several years earlier, hadn’t cost him a penny.

He contacted his doctor to complain that he had not been warned about the possible financial consequences of choosing a stool test to screen for cancer. If Vorhis had chosen to have a screening colonoscopy in the first place, he would not have owed anything because the test would be considered preventive. But after a positive stool test, “for them it was clearly diagnostic, and there’s no freebie for a diagnostic test,” Vorhis said.

He filed an appeal with his insurance company, but lost.

In a breakthrough for patients and their advocates, people who are commercially insured and, like Vorhis, need a colonoscopy after a positive stool test or a so-called direct visualization test such as a CT colonography, will no longer incur direct costs. . Under federal rules for health insurance years beginning May 31, follow-up testing is considered an integral part of preventive screening, and patients cannot be billed under their health plan.

The new rule could encourage more people to get tested for colorectal cancer, cancer experts said, as people can take a stool test at home.

Nine states already required similar coverage in the plans they regulate. Arkansas, California, Illinois, Indiana, Kentucky, Maine, Oregon, Rhode Island and Texas do not allow patients to be billed for follow-up colonoscopies after a positive stool-based test, according to Fight Colorectal Cancer, an advocacy group. New York recently passed a bill that is expected to be signed soon, said Molly McDonnell, the organization’s director of advocacy.

In recent years, advocates have also pushed to eliminate cost-sharing for breast cancer diagnostic services. A federal bill that would require health plans to cover breast cancer diagnostics without cost-sharing for patients — as they do for preventive screening for the disease — has bipartisan support, but has not advanced.

Meanwhile, a handful of states – Arkansas, Colorado, Illinois, Louisiana, New York and Texas – have made progress on this issue, according to tracking by Susan G. Komen, a breast cancer patient advocacy organization that works to get these laws were passed.

This year, 10 more states introduced legislation similar to the federal bill, according to Komen. In two of them – Georgia and Oklahoma – the measures were approved.

However, these state laws only apply to state-regulated health plans. Most people are covered by self-funding and employer-sponsored plans that are regulated by the federal government.

“The main reaction we get is from insurers,” said Molly Guthrie, vice president of policy and advocacy at Komen. “Their argument is cost.” But, she said, there are significant cost savings if breast cancer is identified and treated in its early stages.

A study that analyzed claims data after a breast cancer diagnosis in 2010 found that the average overall costs for people diagnosed with stage 1 or 2 were just over $82,000 in the year after diagnosis. When breast cancer was diagnosed at stage 3, average costs jumped to nearly $130,000. For people with a stage 4 diagnosis, costs in the following year exceeded $134,000. The stages of the disease are determined based on the size and spread of the tumor, among other factors.

When asked to provide health plans’ perspective on eliminating cost-sharing for follow-up tests after an abnormal result, a spokesperson for a health insurance trade group declined to go into detail.

“Health plans design their benefits to optimize affordability and access to quality care,” said David Allen, a spokesman for AHIP, in a statement. “When patients are diagnosed with medical conditions, their treatment is covered based on the plan they choose.”

In addition to cancer screenings, dozens of preventive services are recommended by the US Preventive Services Task Force and should be covered free of charge to patients under the Affordable Care Act if they meet age or other screening criteria.

But if health plans are required to cover cancer diagnostic tests without charging patients, the elimination of cost-sharing for follow-up tests after other types of preventive tests — for abdominal aortic aneurysms, for example — will lag far behind. ?

Come on, said Fendrick. The health care system could absorb these costs, he said, if some low-value preventive care that is not recommended, such as cervical cancer screening in most women over 65, were discontinued.

“This is a slippery slope that I really want to ski,” he said.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Along with Policy Analysis and Research, KHN is one of the three main operational programs of the KFF (Kaiser Family Foundation). KFF is a non-profit organization that provides information on health issues to the nation.

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