In March, a judge in Texas struck down the Obamacare law forcing private health insurers to cover certain preventive medications and services. The Biden administration has appealed the ruling, but many physicians fear this move could cost lives if it stands.
Denise Lee’s lung cancer was symptomless.
In 2018, many years after she quit smoking, she jogged regularly, worked full time as a lawyer and had never felt better.
“I was a runner,” she said. “I would exercise two, three hours a day, five, six days a week, so I didn’t feel as if there was a problem.”
That’s why it was so surprising to find she had lung cancer at the age of 55. When a screening test, called a low-dose lung CT scan, detected a tumor in her left lobe, she was shocked.
Lung cancer is America’s biggest cancer killer, claiming more lives than colon, breast, and prostate cancers combined, taking about 127,000 lives a year. This is in large part because most people don’t start treating it until it is relatively advanced.
Today, Lee credits that lung screening with saving her life.
“If I waited until I had symptoms, I would have been at stage four,” she said. Stage four is generally not considered curable.
What qualifies as a mandatory preventive service?
Pulmonologists and oncologists strongly recommend screening current and former smokers. A recent study found that screening high risk patients saved over 10,000 people between 2014 and 2018 – people who otherwise probably would have died of the disease – all because of early detection.
The low-dose, screening lung CT is one of a number of preventive medications and services that insurers must cover 100% – that is, eligible patients had the right to get the procedure for free, without any copay or having to meet a deductible.
Things falling into this category are generally recommended under the guidelines of the United States Preventive Services Task Force, which suggests age limits and frequencies for these preventive procedures. But experts say legal challenges to the Affordable Care Act, also called Obamacare, threaten to wipe out much of that progress, making a lung cancer diagnosis once again potentially a death sentence.
“This is a very big deal and very much on our radar,” Albert Rizzo, a pulmonologist and the chief medical officer of the American Lung Association, said in a phone interview. “This would be impactful, costing lives [due to] not being able to get screened for lung cancer.”
Earlier this year, the Biden administration appealed the Texas judge’s ruling invalidating the preventive services mandate. If the ruling stands, insurance companies would be allowed to pass on costs for about 75 services and medications that are recommended by the U.S.P.S.T.F. Until the case fully plays out in court, future access to these services remains in question.
A very effective test
“The people eligible for screening don’t have lung cancer, or they don’t know they have cancer,” Andrea Borondy Kitts, a public health expert and patient advocate in Massachusetts, said in a phone interview. “These are people who are asymptomatic and who are eligible because of their smoking history, their age, so they’re at a high risk.”
Borondy Kitts retired from aerospace engineering and changed careers after her husband died of lung cancer in 2013, before the lung screen was adopted as a standard test for former smokers. After finishing graduate school, she decided to specialize in helping patients with lung cancer and advocating for the low-dose lung CT screening for people most at risk for lung cancer.
“Lung cancer screening is very effective,” she said. “Because 80% of the time it finds lung cancer early, when there are a lot of treatment options, and when there’s a potential for a cure.”
Borondy Kitts said the statistics associated with not getting screened are grim. Without screening, 75% of the time, lung cancer is found at a late stage, when there are very few chances for a cure.
“In fact even the five-year survival rate for cancer [found] at that time is less than 10%,” she said.
Borondy Kitts’s own husband fell into that category, getting diagnosed only after he had symptoms of the disease.
“But with lung cancer screening, cancer is found 80% of the time at an early stage,” she said. “And five-year survival can be 90%.”
Lung cancer screening has been included in preventive care recommendations since 2013, two years after a massive study called the National Lung Screening Trial reported overwhelming evidence that it could drastically cut the number of deaths from lung cancer. Evidence for the scan was so strong that the researchers actually stopped the trial early to report the findings and get the recommendation out to the public as soon as possible.
“For high-risk individuals, they found a mortality benefit of 20%,” Rizzo said, meaning the risk of death was 20% lower for the people who got the scan.
What if patients have to pay for all or part of their lung screen?
“One of our concerns is that any hurdle that makes it harder to get lung cancer screening done is going to make it [harder] for eligible people to get tested,” Rizzo said.
He said if the ruling against the preventive mandate stands, and insurers are allowed to charge patients a copay or other coinsurance, it could be a disaster. Experts said that far too few eligible patients who need the screening – about 7% – are getting it every year, resulting in many preventable deaths and a larger disease burden.
Research consistently shows that adding even a small copay statistically reduces the number of people who get medical care, even those with serious health risks.
“So if you add a ‘tax’ to it – a copay – it’s going to set back the little progress that we’ve made,” said Dr. Drew Moghanaki, radiation oncologist and professor at the University of California, Los Angeles.
Denise Lee agreed, saying she probably would not have gotten the screening if her insurance had required her to pay a copay.
“Because I felt fine,” she said. “And to me, having to pay for it would have been another obstacle, another hoop I had to jump off in order to do it.”
“A lot of people will say, you know, I’ve got to pay my gas bill. I’ve got to buy groceries for my kids. I’ve got to get diapers,” she said. “And that shouldn’t have to be a choice.”
A $70 charge is a deterrent
Lee has a friend who felt the same way.
“I’ve been talking to a friend of mine whose smoking history was like mine, and I said, ‘You know, you gotta get this done, you gotta get this done.’ And she said, ‘Well, the problem is they want to charge me $70,’” she said. “She still hasn’t had it done.”
The preventive mandate is one of the most popular parts of the A.C.A., indicating that most Americans don’t want to see it go away.
The insurance industry trade association, AHIP (formerly America’s Health Insurance Plans), when asked if insurers planned to resume making patients pay part or all of the cost of the services in question if the ruling stands, declined to comment but referred us to a press release.
“Every American deserves access to high-quality affordable coverage and health care, including affordable access to preventive care and services that help avoid illnesses and other health problems. As we review the decision and its potential impact with regard to the preventive services recommended by the United States Preventive Services Task Force, we want to be clear: Americans should have peace of mind there will be no immediate disruption in care or coverage.
“We fully expect that this matter will continue on appeal, and we await the federal government’s next steps in the litigation, as well as any guidance from relevant federal agencies.”
Some states already have their own laws requiring insurers to cover preventive screenings. Eligible people with most private health plans in these states would be able to get the lung screen and other preventive services with no charge.
To screen or not to screen? Is it worth it?
While no one knows for sure how the insurance companies would react if the ruling stands, experts said there could be motivation both for and against insurers paying for their members’ screening.
Medical industry critics of the trend of increasing screenings in general – which are by definition tests run on healthy or symptomless patients – have been pushing back on overscreening, or running tests that end up being of no benefit to patients.
Experts also say there is a common misconception that all screenings tests are harmless. One oft-studied risk is a phenomenon people in the business call “incidentalomas,” small visual abnormalities on imaging tests that turn out to be innocuous. The harm is in the cost of investigating the finding to rule out cancer or other illness, radiation and costs including the time, money and the hassle of having to do the obligatory follow-up tests, which are not always minor.
While both overscreening and incidentalomas cost all payers – insurance companies included – money that they may see as not worth the investment, neither of these phenomena really apply to the low-dose CT lung screen. For one thing, as the term “low dose” suggests, the level of radiation exposure is considered incredibly safe.
“The risks are really the low, low risk of the radiation from the CAT scan, which is almost the same as radiation from a chest X-ray or just walking around on a sunny day,” Rizzo said.
The other main risk, Rizzo said, is if the test finds an incidentaloma – something that is not lung cancer. Patients may need follow-up care to determine one way or another, which sometimes includes having a biopsy.
ClearHealthCosts spoke to one patient whose screening CT was negative for cancer but picked up calcification in his coronary artery, a common condition. He spent several weeks worried, waiting to see a cardiologist who later said the calcification posed no real danger.
“There are some small risks that go with those procedures,” Rizzo said. But he believes those risks are worth it.
“The benefit is earlier funding of lung cancer,” he said. “Which is right now the number one cancer killer of both men and women.”
Limits on approvals
And when it comes to the fine print in the A.C.A.’s preventive care mandate, paying for eligible patients’ lung screens returns even more bang for their buck. That’s because insurers are not required to pay for all smokers and former smokers’ lung screens, only the high-risk population. And the U.S.P.S.T.F. enforces very narrow guidelines as to which patients need the test and which do not.
“It’s not like breast cancer, where you can get a mammogram by, you know, by referring yourself,” Borondy Kitts said. “You have to have a doctor’s referral to get a lung cancer screening.”
“The newest recommendation is for those with a 20 pack-year smoking history – meaning they either smoked a pack a day for 20 years, or two packs a day for 10 years – and are between the ages of 50 and 80. And if they’ve still been smoking in the last 15 years,” Rizzo said.
Within the general population, he said, that adds up to about 14 million Americans – that’s 4% of the population. And when you screen a group this small and this specific, the likelihood of finding an actionable tumor is much higher than in the general population.
Like almost all procedures, the cost of a lung screen can vary widely throughout the country, but in Manhattan, Medicare pays between $58 and $184 – relatively inexpensive for something that has been demonstrated to cut your risk of death by 20 percent.
Other experts ClearHealthCosts spoke to pointed out that treating lung cancer at an early stage is much easier and less expensive than treating it at later stages. Encouraging patients to get the screen by paying 100% of the cost may actually save insurers money by avoiding the big treatment bills associated with advanced cancer.
Moghanaki said that while patients with more advanced disease can still have good treatment outcomes, it’s far from ideal to wait for cancer to advance.
“The treatments are more toxic and expensive, so it’s simpler when you catch it early,” he said. “Then, you can either zap it with radiation or you can do a simple surgery that only requires a day or two in the hospital.”
Stigma against smokers affects everyone
While paying for the lung screening may seem like common sense, not everyone sees it that way. Both Dr. Moghanaki and Andrea Borondy Kitts said advocates have spent decades trying to overcome a massive cultural barrier that has held Americans back from fully embracing preventive care for smokers.
“There’s a segment that says, ‘if we only have so much money, why are we helping people who should have known better and never smoked?’” Moghanaki said. “Because to be eligible for screening, you have to have smoked over 140,000 cigarettes. And there are some 15 million people in this country who, yes, have smoked more than 140,000 cigarettes.”
In an era where health costs are out of control, it might be tempting to try to save money by shifting the financial burden back onto smokers for their own preventive care. But the reality is not so simple.
Besides the fact that catching any lung cancer early saves insurers — and theoretically the rest of us — money in the long run, Moghanaki said there are other reasons to make it as easy as possible to get people screened. Doing so, he said, can save lives and improve outcomes for the whole population.
“So if stigma is part of this, well, let’s let the smokers die. The non-smokers are also going to suffer.”
“Half of the people who get lung cancer are not eligible for the screen, and it’s killing a ton of people who never smoked,” he said.
It’s true. In recent decades, the share of people diagnosed with lung cancer among never-smokers has increased. Researchers are not sure exactly why but they say they make up 10% to 20% of new diagnoses. And in order to fight lung cancer on this front, Moghanaki said a better test is needed.
“The way to get to a test that can screen never smokers or light smokers is to build upon [results from] the current millions of [smokers] getting screened,” he said. “We can study them.”
Moghanaki said multiple companies are collecting blood from people who are getting screened, to see if a blood test could one day replace the scan.
“If so, we could screen everyone in the country, so that we don’t lose 150 to 160 thousand people every year who are dying from lung cancer – many of whom never smoked.”
Given the option, will insurers pay or not?
And Bruce Pyenson, an actuary who is expert in assessing financial risk in the health insurance industry, said that big insurance probably knows it’s in their interest to cover the screen.
“In general, the insurance industry has embraced paying for services with a good evidence base, including prevention and screening,” he said in a phone interview. “So by and large, the insurance industry, in my opinion, will not change its policies.”
But Rizzo is not convinced.
“If the recommendation is struck down, we really feel that people are going to be asked to partially pay for any screenings done,” he said.
And making people pay out of pocket will make the screening harder to get, especially for people in historically disadvantaged communities, exacerbating health disparities that already exist.
Research shows that lower socioeconomic groups did not benefit from the declines in smoking over the last few decades in the way wealthier and more educated classes did.
“If we take a look at where lung cancer mortality is the highest, it’s in some of the most underserved areas,” Borondy Kitts said. “More people smoke and are at higher risk of lung cancer in some communities like the LGBTQ community and in Black and and Native American communities.”
Rizzo said: “Those who can’t afford it are just not going to get it done, and those are unfortunately, among the higher risk people in the lower socioeconomic [groups]: Black communities, communities of color. So it’s really important from both a disparity standpoint, as well as general health preventive services, to keep this ruling in place.”
Moghanaki agrees that the stakes are huge, and that the lung screen is an important part of that.
“Lung cancer is definitely, without a doubt, curable when caught early,” he said. “Not just treatable but curable.”
Denise Lee thinks so too. After surgery to remove her upper left lobe and 17 lymph nodes, she was told her cancer had not spread and was considered curable. She was in treatment for over a year, receiving four rounds of chemotherapy followed by immunotherapy. Nearly four years later, she has not had a recurrence.
“And that’s all because of the scan,” she said. “It definitely saved my life.”
Before landmark study, practices were different
And Andrea Borondy Kitts recalls asking her husband’s primary care physician if he should have the screening lung CT, given his risk factors.
“He had quit smoking 11 years prior, but he had smoked heavily in his lifetime,” she said. “And his sister died of lung cancer at a fairly early age.”
But that was before the landmark study, the National Lung Screen Trial, had released its results and publicized its recommendations.
“So the doctor said to me, ‘well, I’ve never heard about this test and I don’t know anything about it.’”
Eight months later, Borondy Kitts’s husband was diagnosed with late stage lung cancer. He died a year and a half later.
She said her husband’s battle with lung cancer was a fairly standard, predictable disease course.
“Typically, it’s diagnosed late when there’s no screening.”
Borondy Kitts said she doesn’t fault their primary care physician.
“I mean, it hadn’t been published,” she said. “So [the screen] was not yet considered evidence-based medicine.”
But it is now.
“I don’t know if lung cancer screening would have saved him,” she said. “So you can juxtapose what happens when there isn’t lung cancer screening.”
Borondy Kitts and Moghanaki said that’s why they are so driven to make the lung screen as accessible as possible for eligible patients.
“Many of us in medicine – primary care, pulmonologists, oncologists – we’re trying to save people’s lives,” Moghanaki said. “And we know we can.”