In late 2014 then 40-year-old Katherine Benson was diagnosed with stage IV lung cancer and told she had less than a year to live. “She was stunned,” says her father Rick Nolan, a former congressional representative of Minnesota. Benson had never smoked and was a young, healthy mother of four. “She’s the last person you would expect to get something like this,” Nolan says.

Lung cancer kills about 130,000 people in the U.S. every year—more than breast and colorectal cancer combined. But early detection makes a dramatic difference: if diagnosed in its localized stages, lung cancer has an almost 60 percent five-year survival rate. That number drops to 7 percent with late detection.

“Every day in the U.S., there’s a jumbo jet full of people who are dying of lung cancer that could have had early detection,” says Claudia Henschke, a professor of radiology at the Icahn School of Medicine at Mount Sinai in New York City. Indeed, most people at risk of developing lung cancer never get screened for it. Increasing outreach to at-risk groups and expanding eligibility could change that—and save lives.

Restrictive Guidelines and a Low Screening Rate

The most recent guidelines from the U.S. Preventive Services Task Force (USPSTF), an independent advisory panel, recommend annual lung cancer screening with a low-dose computed tomography (LDCT) scan. In two large randomized controlled trials, such screening reduced lung cancer mortality by 20 to 24 percent. But to qualify for screening, a person must be 50 to 80 years old, have a smoking history of at least 20 pack-years (a pack a day for 20 years, two packs a day for 10 years, and so on) and currently smoke or have quit within the past 15 years. These criteria are designed to identify patients who are at the highest risk and most likely to benefit from LDCT scans, according to the USPSTF’s vice chair Michael Barry, a primary care physician at Massachusetts General Hospital. The guidelines were also updated last year from even more restrictive ones set in 2013—increasing the number of people eligible for lung cancer screening from 8.1 million to 14.5 million.

Yet Douglas Wood, chair of the department of surgery at the University of Washington and chair of the National Comprehensive Cancer Network’s Lung Cancer Screening Panel, thinks the new guidelines are still too stringent. For one thing, he says, the age maximum is arbitrary—there is “no evidence that once you turn 80, the harms outweigh the benefits”—and overrides what should be a decision made between patients and providers.

Wood also disagrees with the USPSTF’s third criterion, arguing that the risk from smoking does not follow a strict time cutoff. “If somebody stopped smoking 15 years ago, and they’re worried about lung cancer, the only way they can be screened is to either start smoking again—or to lie,” he says.

Barry dismisses the notion that the USPSTF guidelines could incentivize smoking. In revising these guidelines, “we did, in our simulation models, look at other [cutoff] points” for the maximum age and period of smoking cessation, he says, “and we came up with keeping with the [existing] recommendations.” He points out that the major lung cancer screening trials did not include patients who quit smoking more than 15 years ago, so the USPSTF has followed their lead. “Other guideline groups have other rules of evidence than we do,” he says. But in general, the various guidelines “are certainly more similar than they are different.”

Nevertheless, some research suggests that the USPSTF’s eligibility criteria—which help determine Medicare and private insurance coverage—leave out a lot of people. According to one estimate published this year in JAMA Oncology, 35 percent of all patients with lung cancer would be ineligible for screening under the new guidelines. For Black women with lung cancer, the figure is about 66 percent. Because of their lower rates of cigarette use, on average, Black Americans, Hispanic Americans and women all experience significant disparities in lung cancer screening eligibility. For example, according to a 2000 estimate, about half of women who get lung cancer worldwide have never smoked—and thus would never have met the screening criteria.

Barry says the updated 2021 USPSTF guidelines “preferentially increase the proportion of women, Black people and Hispanic people who are eligible for screening, so we’ve made a pretty big step.” He also emphasizes that the organization cares deeply about equity in screening, adding, “We’re always eager for more evidence to fine-tune the guidelines as we go forward.”

A more immediate challenge for screening is that, even among those who are eligible, the actual number getting LDCT scans is very low. In fact, only about 5 percent of people who met the old USPSTF guidelines were screened for lung cancer in 2015. That’s compared with screening rates of about 65 to 80 percent for colorectal, cervical and breast cancer in 2019.

There is no one reason for this gap, according to Jamie Studts, a professor of medical oncology at the University of Colorado Anschutz Medical Campus School of Medicine. Part of the low rate may be that determining lung cancer screening eligibility can be difficult for overworked primary care providers, unlike other cancer screenings that have simple age-based criteria. The gap may also be related to the stigma and fatalism around lung cancer, as patients often think they will be blamed for having the disease and will not survive anyway.

The key barrier, however, might be a lack of awareness among physicians and the public: nearly 70 percent of people don’t know that lung cancer screening is available at all. Other cancer screenings have been around for 25 to 50 years, whereas the USPSTF only began recommending lung cancer screening nine years ago. It may simply take time to embed LDCT scans into the culture of health care.

Improving Awareness and Access

Patient advocates and researchers are hoping to speed up this embedding process, starting with renewed public awareness campaigns. Denise Lee, a 60-year-old retired public defender from California, knows their importance firsthand. Stuck in traffic on her way home from work, she saw a billboard telling her that lung cancer screening could save her life. Lee decided to bring it up with her doctor but was told she didn’t qualify. A year later, after using an online quiz to determine that she was finally eligible, Lee followed up with her physician, got the LDCT scan and was diagnosed with Stage IB lung cancer. Now a four-year lung cancer survivor, she simply says, “A billboard saved my life.”

Awareness campaigns don’t need to be fancy, but they should be more regionally targeted and personalized, Studts says. Since 2014 he has headed the Kentucky LEADS Collaborative, where he works with a network of community partners to meet face-to-face with primary care providers, educate them about the lung cancer screening guidelines and address their concerns. Studts also highlights the importance of combining smoking cessation and lung cancer screening discussions, because both are critical for reducing mortality and because primary care providers already do the former. Beyond Kentucky, there may also be an opportunity to leverage this messaging combination in national “quit smoking” ads. But Studts emphasizes the need for an empathy-first approach given that antitobacco campaigns have historically helped increase lung cancer stigma.

Ashley Prosper, chief of cardiothoracic imaging at UCLA Health, thinks there’s also a promising collaboration between lung cancer screening and other screening programs. In addition to doing outreach work to increase screening uptake in Black communities, Prosper works on the Mammosphere Project to assess eligibility for lung cancer screening among women who already receive mammograms. She calls this approach “opportunistic screening,” a method in which the high adherence rates of one kind of test are employed in service of another.

Last year Hannah Hazard-Jenkins, a breast cancer surgeon and director of the West Virginia University (WVU) Cancer Institute, similarly launched LUCAS—a lung cancer screening unit operating out of a tractor trailer. This 18-wheeler traverses the back roads of Appalachia, following in the path of WVU’s mobile mammography unit Bonnie’s Bus, and provides lung cancer screening to those in the most rural parts of the state regardless of insurance status. After local providers evaluate patients’ screening eligibility, LUCAS arrives to perform the LDCTs. The scans are read back at WVU, and patients are referred for follow-up care close to home. “We have to be more creative about bringing health care to people, as opposed to always forcing them to us,” Hazard-Jenkins says.

Expanding Eligibility

Another way to facilitate screening might be to simply expand testing criteria, Henschke says. Since 2001 she has led an initiative to open lung cancer screening to anyone age 40 or older, regardless of smoking history, as part of a research protocol. “Clearly you are going to find more lung cancers in people who have a greater smoking history,” she says, “but one quarter of people diagnosed each year with lung cancer are never smokers.” Henschke doesn’t want to deny these patients a lifesaving tool. Nolan, the former congressman, agrees with her and similarly wants lung cancer screening to be covered for everyone age 40 or above. He helped craft Katherine’s Lung Cancer Early Detection and Survival Act of 2020 (named for his daughter) to make this a law. Although a revised version of the bill was introduced in Congress last year, it hasn’t yet been voted on.

If passed, this act would represent a major shift from the USPSTF guidelines. Nolan says that it would open access to individuals who do not meet the age criteria but are still at high risk of lung cancer because of family history, exposure to the radioactive gas radon or other risk factors unrelated to smoking. “I think extending the screening criteria, like at Mount Sinai, is appropriate if it’s done as part of a clinical trial,” Wood says. He is more cautious about making this expansion a law, however. “Unfortunately, as much as I see patients every week that have never smoked and have lung cancer, it is still uncommon,” Wood adds. “And there’s a trade-off in terms of benefits and harms.”

Balancing Risks and Benefits

Barry says potential harms include false-positive results that lead to anxiety and additional testing—and the overdiagnosis and treatment of small lung nodules that would never have become life-threatening. The radiation exposure from the scan itself can also increase cancer risk. Prosper acknowledges these considerations and the need to discuss them with patients. She notes, however, that radiation risk is minimal with the LDCT scan—equivalent to six months of natural background radiation—and that false-positive rates are declining. These rates were 22 percent for the baseline scan and 27 percent for follow-up scans in the 2011 National Lung Screening Trial but dropped to 5 to 13 percent with the Lung CT Screening Reporting and Data System (Lung-RADS), a classification tool that standardizes radiologists’ reporting and follow-up recommendations.

Hazard-Jenkins acknowledges that overdiagnosis is indeed a significant problem in the case of breast cancer. But for lung cancer, she says, “at the moment, I’m not sure you could overscreen because we’re so profoundly underscreening.”

Ultimately, the stakes involved in lung cancer screening—and in getting it right—are immense. “Policy makers have to understand that lung cancer screening is currently the most significant missed opportunity to change cancer outcomes bar none,” Studts says. Though experts disagree on the best ways to deploy LDCT scans, nearly all of them agree that the 5 percent screening rate is unacceptable.

A couple of hours before Benson died, Nolan told her, “I’m looking forward to being with you as soon as possible.” She responded, “No Dad, not until you get my bill passed.” Nolan says he’s working on his daughter’s dying wish to help save the hundreds of thousands of people in the U.S. who still die from lung cancer every year.