When Cynthia Johnson learned she owed $ 200 out of her own pocket for a diagnostic mammogram in Houston, she nearly put off the test telling 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 education evaluation at a university. But he decided to go ahead with the test because he could put the copy on a credit card.
Johnson was 39 in 2018 when that mammogram confirmed that the lump she had noticed in her left breast was cancer. Today, after a lumpectomy, chemotherapy and radiotherapy, she is disease free.
Having to choose between paying rent and getting the tests they need 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 the normal co-payments, coinsurance, or deductible costs required by their plan. But if a screening returns an abnormal result and a healthcare provider orders multiple tests to figure out what’s wrong, patients could be waiting hundreds or even thousands of dollars for diagnostic services.
Many patient advocates and medical experts say free 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 technical,” said Dr. A. Mark Fendrick, director of the University of Michigan’s Center for Value-Based Insurance Design. “The federal government should make it clear that commercial and Medicare plans should fully cover all the steps required to diagnose cancer or another problem, not just the first screening test.”
A study that looked at over 6 million commercial insurance claims for mammogram screening from 2010 to 2017 found that 16% required imaging or other additional procedures. According to the study by Fendrick and several colleagues and published by JAMA Network Open, half of the women who received additional imaging and a biopsy paid $ 152 or more in out-of-pocket expenses for follow-up testing in 2017.
People who needed tests after other preventive 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 colorectal cancer test; and $ 424, on average, was charged for follow-up tests after a CT scan to check for lung cancer, according to further research by Fendrick and others.
Van Vorhis of Apple Valley, Minnesota took a stool test at home two years ago for colorectal cancer screening. When the test came back positive, the 65-year-old retired lawyer needed a follow-up colonoscopy to determine if something serious was wrong.
The colonoscopy was meaningless – it found some benign polyps, or clusters of cells, that the doctor cut out during the procedure. But Vorhis was amazed at the $ 7,000 he owed under his individual health plan. His first colonoscopy several years ago hadn’t cost him a dime.
He contacted his doctor to complain that he was not warned of the potential financial consequences of choosing a stool test for cancer screening. If Vorhis had chosen to undergo a screening colonoscopy in the first place, he would not have owed him anything because the test would have been considered preventive. But after a positive stool test, “for them it was clearly diagnostic and there’s no giveaway for a diagnostic test,” Vorhis said.
He appealed to his insurer but lost.
In a twist 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 have to face direct costs. Under federal rules for health plan years starting after May 31, follow-up testing is considered an integral part of preventative screening, and patients cannot be charged anything from their health plan.
The new rule could encourage more people to get screened for colorectal cancer, cancer experts said, as people can do a stool test at home.
Nine states have already requested similar coverage in the plans they regulate. Arkansas, California, Illinois, Indiana, Kentucky, Maine, Oregon, Rhode Island, and Texas do not allow patients to be charged for follow-up colonoscopies after a positive stool test, according to Fight Colorectal Cancer, a advocacy group. New York recently passed a bill that is expected to be converted into law 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 diagnostic imaging for breast cancer without patient cost sharing, just like they do for preventative screening for the disease, has bipartisan support but has made no progress.
Meanwhile, a handful of states – Arkansas, Colorado, Illinois, Louisiana, New York and Texas – have moved forward on this issue, according to monitoring by Susan G. Komen, a breast cancer advocacy organization working to get these laws were passed.
This year, according to Komen, 10 more states have introduced legislation similar to the federal bill. 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 employer-sponsored, federally regulated self-financing plans.
“The main pushback we receive comes from insurers,” said Molly Guthrie, Komen’s vice president of policy and advocacy. “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 data on complaints after a diagnosis of breast cancer in 2010 found that the average overall costs for people diagnosed with stage 1 or 2 were just over $ 82,000 in the year following diagnosis. When breast cancer was diagnosed at stage 3, the average costs jumped to nearly $ 130,000. For people with a stage 4 diagnosis, the 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’ views on eliminating cost-sharing for follow-up testing after an abnormal result, a spokesperson for a health insurance business group declined to elaborate.
“Health plans design their benefits to optimize affordability and access to quality care,” AHIP spokesperson David Allen said in a statement. “When patients are diagnosed with medical conditions, their treatment is covered under the plan they choose.”
In addition to cancer screening, dozens of prevention services are recommended by the US Preventive Services Task Force and must 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 needed to cover cancer diagnostic tests without charging patients, the elimination of cost-sharing for follow-up testing after other types of preventative screening, such as for abdominal aortic aneurysms , will it be far behind?
Come on, Fendrick said. The health system could absorb those costs, she said, if some low-value preventive care not recommended, such as cervical cancer screening in most women over the age of 65, were stopped.
“This is a slippery slope that I really want to ski,” he said.
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