During a routine visit to the Good Samaritan Clinic in Morganton, North Carolina in 2018, Herbert Buff casually mentioned that he sometimes had trouble breathing.
He was 55 and had been smoking for decades. So the doctor recommended Buff schedule time on a 35-foot-long bus operated by the Levine Cancer Institute that would pass through town later in the week, offering free lung cancer screenings.
Buff found the concept of the “lung bus” odd, but he’s glad he jumped on it.
“I learned that you can have lung cancer and not even know it,” said Buff, who was diagnosed as Stage 1 by doctors at the Rolling Clinic. “Early detection might have saved my life. It might have given me a few more years.”
The Lung Bus is a big draw in this rural western North Carolina area because some people aren’t comfortable going to — and in many cases don’t have access to — a hospital or to a doctor’s office, said Darcy Doege, coordinator of the screening program.
“Our team makes people feel welcome,” she said. “We can see up to 30 patients a day who are referred by their GP or pulmonologist, but we also welcome walk-in visits.”
Lung cancer is the deadliest of all cancers. It grows slowly and usually goes undetected until it has spread to other parts of the body. Early detection is key to survival, especially for a high-risk person like Buff, who is African American and has a history of smoking.
Although it is well documented that black smokers develop lung cancer at a younger age than white smokers, even when they smoke fewer cigarettes, the guidelines doctors use to refer patients for screening have been slow to reflect disparity. If Buff had had the same conversation with his doctor a year earlier, he wouldn’t have qualified for the CT scan that detected a nickel-sized growth on his left lung.
But screening is only part of the story, said experts who assess what happens before and after a person has been checked for signs of cancer.
Researchers are concerned about the lack of diverse representation in the clinical studies upon which screening recommendations are based. For example, about 13% of the US population is black, but blacks made up only 4.4% of participants in the National Lung Screening Trial, a large, multi-year study from the early 2000s that examined whether low-dose CT screening may reduce lung cancer mortality.
Basing guidelines on trials with so little diversity can lead to delayed disease detection and higher death rates, said Dr. Carol Mangione, chair of the U.S. Task Force on Preventive Services, a group of national experts who make recommendations on services such as screenings, behavioral counseling, and preventative medications. Its recommendations play a major role in determining which tests and procedures health insurance companies will agree to pay for.
“We know that black people are diagnosed and tend to die more from colon cancer, for example,” Mangione said. “But we don’t have enough evidence to say there should be a different recommendation for black people, because black people have historically not been well represented in clinical trials.”
When Buff was diagnosed with lung cancer, the U.S. Preventive Services Task Force recommended screening for people age 55 and older with a smoking history of 30 “bundles of years,” which means the average person smoked one pack of cigarettes a day for three decades. Buff made the cut.
But a 2019 study published in JAMA Oncology found that under those parameters, 68% of black smokers would not have been eligible for screening at the time of their lung cancer diagnosis, compared to 44% of white smokers. In 2021, the US Task Force on Preventive Services lowered the recommended age for lung cancer screening to 50 and reduced the number of pack-years to 20.
The new guidelines make an additional 8 million Americans eligible for screening. But that’s not the only problem to be addressed, said Dr. Gerard Silvestri, a pulmonologist specializing in lung cancer at the Medical University of South Carolina.
“It doesn’t matter if a bunch more African Americans are eligible if they don’t have coverage, are suspicious of the medical system, and don’t have access to it,” Silvestri said.
“You could exacerbate that disparity,” he said, “because more white people will also become eligible and likely have more access.”
Silvestri co-leads the Medical University of South Carolina’s portion of a four-year, $3 million Stand Up to Cancer grant-funded project focused on addressing lung cancer disparities. Researchers from the multi-center collaboration – which also includes the University of North Carolina-Chapel Hill’s Lineberger Comprehensive Cancer Center and the Massey Cancer Center at Virginia Commonwealth University – said better screening rates would improve outcomes in underserved communities.
“Patients of color, especially black patients, tend to have less access to care, less rapid follow-up when abnormal findings are found, and later stages of diagnosis,” said epidemiologist Louise Henderson, lead researcher. of the study at the Lineberger center.
It takes concerted community efforts to address the range of health disparities that lead to poor outcomes for communities of color, experts said. The lung bus that Buff visited is just one example of how cancer researchers are rolling out programs in rural communities. The Atrium Health Levine Cancer Institute in Charlotte, North Carolina, launched the effort in March 2017 to make screening more accessible to underserved people in vulnerable communities who are either uninsured or underinsured.
The bus operates in 19 counties in North and South Carolina. In an analysis published in the journal The Oncologist in 2020, the Levine Cancer Institute said the project identified 12 cancers in 550 patients and called the results a “change in policy”.
By September 2021, the researchers said, the bus had identified 30 cancers in 1,200 screened patients. “21 of which were in the potentially curable stage,” said Dr. Derek Raghavan, president of the Levine Cancer Institute and lead author of the analysis. About 78% of those screened were poor and from rural areas, he said, and 20% were black Americans.
“You can overcome disparities in care if you really want to,” Raghavan said.
The Lineberger Center has also partnered with federally licensed health centers in the Raleigh-Durham area and recruited community health counselors to educate patients about lung cancer risks and how easy it is to get detect. He has also trained patient and financial navigators to help them deal with the often overwhelming consequences of a diagnosis.
Recent studies in JAMA Oncology and the Journal of the National Cancer Institute found that expanding Medicaid under the Affordable Care Act improves overall cancer survival among all racial and ethnic groups and reduces racial disparities in cancer survival. Of the three research sites participating in the Lung Cancer Disparities Project, the Massey Cancer Center in Virginia is the only one in a state to have expanded Medicaid.
Vanessa Sheppard, associate director of community engagement and health disparities at the center, said she’s seen anecdotal evidence that expanding health care coverage improves cancer screening rates.
Nevertheless, awareness of testing remains low in the black community. Sheppard thinks this may be because general healthcare providers aren’t educating patients about available screening tools.
A low-dose CT scan, for example, is one of the most powerful tools available to detect lung cancer early and reduce deaths. But according to the American Lung Association’s 2022 Lung Health Barometer, nearly 70% of people don’t even know this type of screening is available. And according to Silvestri, only a small percentage of those who are eligible actually get tested.
Perhaps the final hurdle is erasing disparities in who receives follow-up care after testing. A 2020 study published in the journal BMC Cancer found that black patients who were referred to a lung cancer screening program were consistently less likely than white patients to get screened and had longer wait times. to seek follow-up care when they got screened.
Henderson said some patients may mistakenly believe that lung cancer is incurable and just don’t want to hear bad news.
Sheppard said screening can be used to educate and build trust with patients.
“Once we get people onboarded into the system, it’s up to us to make sure they know what’s expected, that it’s not a one-time thing, and that we get them onboarded into the care system,” said she declared. “I think it will help a lot.”
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