Preventive care may be free, but follow-up diagnostic tests can bring big bills.

When Cynthia Johnson learned that she would have to pay $ 200 out of pocket for a diagnostic mammogram in Houston, she almost stopped testing which told her she had breast cancer.

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

Johnson was 39 years old in 2018 when that mammogram confirmed that the defect he noticed in his left breast was cancer. Today, after lumpectomy, chemotherapy and radiation, he is free.

Choosing between renting and taking their 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 free of charge. This means that patients do not have to pay for general co-payments, currency insurance, or discounts for their plans. But if a screening yields an unusual result and a healthcare provider orders further tests to find out what went wrong, patients may be hooked up for hundreds or even thousands of dollars for diagnostic services.

Cynthia Johnson is seen taking selfies and smiling.  A blue chair is seen flickering in the background behind him.
Cynthia Johnson was reluctant to pay $ 200 out of pocket for a test after she was diagnosed with a breast cancer diagnosis. Patient attorneys and medical experts say diagnostic tests are necessary – and patients should be covered at no cost, as much as preventive screening.(Cynthia Johnson)

Many patient advocates and medical experts say that coverage of any costs should extend beyond the initial preventive examination to imaging, biopsy or other diagnostic services.

“The billing difference between screening and diagnostic testing is a technical one,” said Dr. A. Mark Fendrick is director of the Center for Value-Based Insurance Design at the University of Michigan. “The federal government should make it clear that commercial planning and Medicare should not only cover all the necessary steps to diagnose cancer or other problems, but also the first screening test.”

A study examining more than 6 million commercial insurance claims to screen mammograms from 2010 to 2017 found that 16% required additional imaging or other procedures. According to a survey by Fendrick and several colleagues and research published by JAMA Network Open, more than half of women who underwent further imaging and biopsy in 2017 spent $ 152 or more on follow-up tests.

Charges for those who needed testing after other preventive cancer screenings also increased: half paid for a biopsy after questionable results in cervical cancer tests $ 155 or more; The average bill for a colonoscopy after stool-based colorectal cancer examination was $ 100; According to additional research by Fendrick and others, an average of $ 424 was charged for a follow-up test after a CT scan to check for lung cancer.

Van Vorhis of Apple Valley, Minnesota tested the stool at home two years ago to screen for colorectal cancer. When the test returns positive, a follow-up colonoscopy is needed to determine if the 65-year-old retired lawyer had something serious wrong.

The colonoscopy was remarkable: it found a few benign polyps or clusters of cells that the physician had torn out during the procedure. But Voris owed 7,000 under his personal health plan. His first colonoscopy a few years ago cost him less than a cent.

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

He filed an appeal with his insurer but lost.

A breakthrough for patients and their lawyers, who are commercially insured and like Vorhis, require a colonoscopy after their so-called direct visualization test, such as a positive stool test or CT colonography, and will not cost out of pocket. According to federal rules for the health plan year beginning May 31, follow-up testing is considered an integral part of preventive screening and patients cannot be charged for it by their health plan.

The new rule could encourage more people to get colorectal cancer screening, cancer experts say, as people can get stool-based tests at home.

Nine states already need similar coverage in their regulated plans. Arkansas, California, Illinois, Indiana, Kentucky, Maine, Oregon, Rhode Island and Texas do not allow patients to be charged for follow-up colonoscopy 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 into law soon, said Molly McDonnell, the organization’s director of advocacy.

In recent years, advocates have also pushed for the elimination of cost sharing for breast cancer diagnosis services. A federal bill that requires health plans to cover diagnostic imaging of breast cancer without sharing patient costs – just as they do for preventive screening of the disease – has bilateral support but no progress.

Meanwhile, a handful of states – Arkansas, Colorado, Illinois, Louisiana, New York and Texas – have passed the law, according to tracking Susan G. Komen, an advocacy firm for breast cancer patients.

This year, an additional 10 states have enacted laws similar to the federal bill, according to Komen. Two of them – Georgia and Oklahoma – have passed.

These state laws only apply to state-controlled health plans. Most people are covered by employer-sponsored, self-financed plans that are regulated by the federal government.

“The initial pushback we get comes from insurers,” said Molly Guthrie, Komen’s vice president of policy and advocacy. “Their argument is cost.” But, she said, significant costs are saved when breast cancer is detected and treated at an early stage.

A study that analyzed claims data after a diagnosis of breast cancer in 2010 found that the average overall cost of people diagnosed with stage 1 or 2 was more than $ 82,000 a year after diagnosis. When breast cancer was diagnosed in stage 3, the average cost reached about $ 130,000. For people diagnosed with Stage 4, the costs exceeded $ 134,000 the following year. Stages of the disease are determined, among other factors, based on the size and extent of the tumor.

Asked to provide a health plan perspective on the cost-sharing exclusion for follow-up tests after abnormal results, a spokesman for a health insurance trade group declined to give details.

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

In addition to cancer screening, dozens of preventive services are recommended by the U.S. Preventive Services Task Force, and patients should be covered without charge under the Affordable Care Act if they meet age or other screening criteria.

But if patients need a health plan to cover diagnostic cancer testing without charging, will the cost-sharing of follow-up tests be eliminated after other types of preventive screening – for example, for abdominal aortic aneurysms – far behind?

Bring it on, Fendric said. The health system could absorb those costs, she said, if some low-cost preventive care that is not recommended, such as cervical cancer screening in most women over the age of 65, was discontinued.

“It’s a slippery slope that I really want to ski down,” he said.

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