'The Push to End Cancer Screening Purgatory' Transcript

September 29, 2022

Note: This transcript has been created with a combination of machine ears and human eyes. There may be small differences between this document and the audio version, which is one of many reasons we encourage you to listen to the episode!

Dan Gorenstein: Each year millions of Americans visit the doctor for their regular mammograms, colonoscopies, pap smears and lung scans.

But for many patients…they’re free. And a steady stream of public service announcements tell us they can save our lives.

Sfx: Cancer screening ad montage: If you smoked, get scanned. Don’t miss life’s greatest moments, it’s simple, get screened for colon cancer. Get your mammogram. It might save your life.

DG: These screenings can catch suspicious bumps, lumps and masses…but they rarely tell you whether you definitely have cancer.

To find that out, most patients need follow-ups.

But to learn about your potentially life-changing news, you’d need to spend hundreds or thousands of dollars on the next batch of tests.

Today, the push to get patients out of this cancer screening purgatory.

From the studio at the Leonard Davis Institute at the University of Pennsylvania, I’m Dan Gorenstein. This is Tradeoffs.


DG: If you’ve gotten a free cancer screening in the past decade, you likely have Dr. Mark Fendrick to thank.

Mark Fendrick: I have to tell you that the intuitive idea of having more of the good stuff in health care and less of the bad stuff did seem to be pretty well received.

DG: Mark is a physician and Director of the Center for Value-Based Insurance Design at the University of Michigan.

Mark helped design a popular part of the Affordable Care Act that made nearly 100 preventive care services free, including screenings for some of America’s deadliest cancers.

One estimate finds pre-ACA people with private insurance spent $600 on average to get colonoscopies to get screened for colorectal cancer.

Since the law passed in 2010, people pay nothing.

MF: To think that an idea might impact over 150 million Americans by allowing them to have greater access to services that we’re incredibly certain are going to help their quality of life is a professional moment of a lifetime.

DG: But by 2016, Mark began to see what amounted to be a major flaw in the part of Obamacare that he helped write.

And it was happening right in front of him.

MF: I learned of this in my own practice.

DG: A patient had just opted to skip a free in-home colorectal cancer screening test.

The resident who treated that person explained why.

MF: They heard their neighbor had the exact same test, got that test for free. But when the test turned positive, they had to pay over $1,000 to get a follow up colonoscopy, which is the necessary test to determine whether a patient has cancer.

DG: The episode helped Mark realize the problem is the ACA required only initial screening tests to be free.

So if the first screening test a patient got was a colonoscopy – no charge.

But if the patient did a home test, has a positive result and needs a colonoscopy to confirm if she has cancer – that could cost thousands of dollars.

Mark was angry, he had advocated that the whole spectrum of tests to diagnose cancer should be free. The whole point was to encourage early detection, and save lives.

He wanted to know how often patients faced expensive follow-up tests that were necessary to diagnose cancer.

MF: It became quickly evident that this was not a rare instance.

DG: Mark and his colleagues dug into data from health insurers and started publishing papers.

MF: …showing that out-of-pocket costs for follow up testing is common. And the out-of-pocket costs are substantial.

DG: Their research showed these expensive follow up tests were also a problem for patients getting screened for breast, cervical and lung cancer too.

The ACA had mandated insurers cover screenings for all four cancers after a panel of independent experts found the benefits far outweighed any downside.

People with private insurance or Medicare were paying on average between 100 and 400 dollars to diagnose these cancers. In some cases, much much more.

To put that in context, the Federal Reserve reports one in every three Americans struggles to afford an unexpected $400 bill.

MF: The emotional toll of being told that your first test is positive and you may have cancer is huge. Add on top of that a financial burden that either might put you in a dire straits financially or lead you to give up on food, rent or gas. This infuriated me.

DG: Mark was flummoxed.

He felt regulators and health insurers had distorted the original intent of the preventive care provision, which was to make the entire diagnostic process free.

And they’d left millions of vulnerable patients nationwide with more questions than answers.

MF: We’ve asked these patients to get on this treadmill

DG: Now, they’d need to pay to get off it.

So Mark rounded up his old ACA allies to propose a federal fix..

DG: 2,000 miles west of Ann Arbor, epidemiologist Gloria Coronado in Portland, Oregon, had identified the same colorectal payment problem as Mark, just a few years earlier.

Gloria Coronado: Nobody really wants to talk about poop.

But Gloria did.

She knew screening for the second deadliest cancer in the country could do more than catch cancer early.

She says during a colonoscopy physicians can remove precancerous growths called polyps – which Gloria compares to weeds.

GC: When a doctor goes in to view your colon, they take out all these polyps, just like you take out weeds in your garden. And once those polyps are taken out, the patient won’t get colorectal cancer.

DG: Gloria studies health disparities at the Kaiser Permanente Center for Health Research.

After these new ACA provisions kicked in, she worked with safety-net clinics in Oregon and California to help get more low-income patients and patients of color tested.

National data from 2012 showed big disparities – with half as many safety-net clinic patients getting regular screenings as patients with private insurance.

Gloria thought the free tests could help close that gap.

But she found clinic doctors conflicted.

GC: They were really struggling with how can we ethically and practically promote testing when we know that patients might face financial barriers to getting that follow up procedure done?

DG: Gloria saw a rare opportunity, a chance to do more than research inequities.

She had the ear of an influential Oregon state representative. Gloria explained it was clear that the cost was preventing low-income patients from getting screened and it could be fixed by policy.

GC: Like this was just a ding, ding, ding situation.

DG: In 2014 Oregon became the first state to change the law to require both Medicaid and some private insurance plans to make these follow up colonoscopies free for patients.

At the same time the state also expanded its Medicaid program nearly doubling the number of low-income patients who were eligible for colorectal cancer screenings.

GC: What the expansion did was bring in adults who had not seen their doctor for years.

DG: Finally, the Oregon Medicaid program handed out bonuses for increased screening rates.

Together these changes worked.

What had once been a 40 percent disparity in screening rates between Medicaid patients and people with private insurance evaporated in just three years.

Data showed the state’s community health centers were doing more of these screenings than their peers in neighboring states.

GC: I think that both of those data points are pretty compelling, that policy can make a difference

DG: Gloria’s phone started ringing.

GC: Can we do the same thing in Washington? Can we do the same thing in California? And what about in Minnesota?

DG: Gloria said it seemed like everybody wanted to borrow her playbook.

At least eight more states have closed this coverage gap since 2014, including Kentucky, Arkansas and California.

DG: Meanwhile, Mark Fendrick had been making progress at the federal level.

By 2022, he helped convince the regulators to start forcing private insurance companies to cover these tests. Medicare is expected to do the same beginning in 2023.

DG: But remember – all this work, all that momentum, is only for one cancer.

Millions of other patients continue dealing with expensive follow-up tests for lung, breast and cervical cancers.

After the break, other advocates pick up Gloria’s blueprint, and Mark grapples with some tough math.


DG: Welcome back.

Today, we’re looking at a key provision of the Affordable Care Act that encourages people to get free cancer screenings.

But there was a hitch, only the first screening test was free.

If there was a positive result or a suspicious growth, it could leave a person on the hook for hundreds, sometimes thousands of dollars for additional tests to confirm if it was cancer or not.

Advocates and researchers have managed to close that loophole for colorectal cancer, with follow-up colonoscopies now free.

But people with three other cancers: lung, breast and cervical, which combine to kill nearly 200 thousand Americans every year, still face those costs for tests to verify if they have cancer.

Announcer: I’d like to now call on Leslie Croft.

DG: Patients like breast cancer survivor Leslie Croft.

Leslie Croft: “In order for you to understand the importance the bill holds I need you to understand my story…”

Leslie testified before Ohio legislators last fall as they debated a bill to remedy this screening problem.

She explained she needs ongoing MRI’s every few years to see if her cancer resurfaces.
Leslie’s insurance company denied the claim for the $3,000 dollar MRI not budging even after multiple appeals.

LC: I was told in no uncertain terms by them that unless I had a diagnosis of cancer my claim would be denied. I told them I’m trying to prevent cancer. To date I have not had my MRI yet.

DG: Testimony from Leslie and other patients helped convince Ohio lawmakers to pass a bill to require coverage for more breast cancer screenings.

Using the colorectal cancer playbook, breast cancer advocates have pushed nine states to mandate coverage for diagnostic tests…with plans to introduce legislation in several states next year including Florida, Missouri and Iowa.

When it comes to the other two cancers – cervical and lung – advocates told us they’re in the early days of addressing this issue.

DG: Health care officials have determined that – for appropriate populations – cancer screenings are a valuable tool that can help detect cancer early…potentially saving money and someone’s life.

Yet there’s still opposition to making the next round of tests needed to confirm a diagnosis in these cases free.

University of Michigan’s Mark Fendrick says the resistance is coming from health insurance companies.

MF: The bottom line is it comes down to dollars. Who is going to pay for it?

DG: Based on our reporting it is difficult to gauge insurers interest in picking up the full tab for this second batch of screening tests.

Statements from UnitedHealthcare and the industry trade group AHIP all told us they support screening guidelines as laid out in ACA, and the now the new ones covering costs for additional colorectal screenings.

If insurers were required to fully cover tests for the other three cancers, they would almost certainly pass those costs along in the form of higher premiums, increasing what we’d all have to pay.

For insurers who may be interested in providing more screenings for these three cancers, but worried about additional costs, Mark says there’s a fix.

He says insurance companies could work with hospitals and doctors to reduce screenings for patients who are at low risk for cancer.

MF: This is the rob low value care Peter to pay high value care Paul.

DG: One study, for example, shows it’s common for doctors to perform unnecessary pap smears on women under 21.

A forthcoming book, pegs the cost of over screening for various cancers at $21.5 billion a year.

Mark says if insurers could get doctors and patients to more closely follow screening guidelines, that could free up money to help cover follow-up tests for people with suspicious growths.

MF: There’s enough money in the system. We just spend it on the wrong things, on the wrong people at the wrong time, in the wrong places.

DG: Although it’s taken more than a decade to make these small gains in cancer screenings, they have helped more people get more high value tests.

However this progress could be undone after a federal judge in Texas ruled the provision in the ACA that requires insurers to fully cover these screenings is unconstitutional.

If the provision is overturned, that could return us to the days when individual insurers decided how much of what screening tests to cover. If at all.

I’m Dan Gorenstein this is Tradeoffs. 

This episode is part of a series on low value care supported, in part, by Arnold Ventures.

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Episode Resources

Selected Reporting and Research:

Court Holds That Key ACA Preventive Services Requirements Are Unconstitutional (Katie Keith, Health Affairs, 9/8/2022)

Follow-up costs can add up if a free cancer screening shows a potential problem (University of Michigan Institute for Healthcare Policy & Innovation, 7/8/2022)

Preventive Care May Be Free, but Follow-Up Diagnostic Tests can Bring Big Bills (Michelle Andrews, Kaiser Health News, 6/14/2022)

A ‘more, more, more’ approach to cancer screening is misleading and harmful (David Ropeik, STAT, 2/24/22)

Effectiveness of a Mailed Colorectal Cancer Screening Outreach Program in Community Health Clinics (Gloria Coronado, Amanda Petrik, William Vollmer, et al; JAMA Internal Medicine; 8/6/2018)

Episode Credits


Mark Fendrick, MD, Professor of Medicine and Health policy University of Michigan; Director, Center for Value-Based Insurance Design.

Gloria Coronado, PhD, Epidemiologist and Health Disparities Researcher, Kaiser Permanente Center for Health Research

The Tradeoffs theme song was composed by Ty Citerman, with additional music this episode by Blue Dot Sessions and Epidemic Sound.

This episode was produced by Alex Olgin and mixed by Andrew Parrella. Editing assistance from Cate Cahan.

Additional thanks to Molly McDonnell, Molly Guthrie, Ruth Carlos, Michele Young and the Tradeoffs Advisory Board and our stellar staff!