During a routine visit to the Good Samaritan Clinic in Morganton, N.C., in 2018, Herbert Buff casually mentioned that he sometimes had trouble breathing.

He was 55 years old and a decades-long smoker. 

“I learned that you can have lung cancer and not even know it,” said Buff, who was diagnosed at stage 1 by doctors in a clinic. “The early screening might have saved my life. It might’ve given me quite a few more years.”

Lung cancer is the deadliest of all cancers. It grows quietly and is usually not detected until it has spread to other parts of the body. Early detection is key to survival, especially for someone at high risk like Buff, who is African-American.

Although it is well documented that Black smokers develop lung cancer at younger ages than White smokers even when they smoke fewer cigarettes, the guidelines that doctors use to recommend patients for screening have been slow to reflect the disparity. But screening is only part of the issue, said experts who evaluate what happens both before and after a person is checked for signs of cancer.

Researchers are concerned about the lack of diverse representation in the clinical studies on which the screening recommendations are based. For example, about 13% of the U.S population is Black, but Black people made up just 4.4% of participants in the National Lung Screening Trial, a large, multiyear study in the early 2000s that looked at whether screening with low-dose CT scans could reduce mortality from lung cancer. 

Basing guidelines on trials with so little diversity can lead to delayed disease detection and higher mortality rates, said Dr. Carol Mangione, chair of the U.S. Preventive Services Task Force, a panel of national experts who make recommendations about services such as screenings, behavioral counseling, and preventive 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 get diagnosed with and tend to die more from colon cancer, for example,” Mangione said. “But we don’t have sufficient evidence to say that there should be a different recommendation for Black people, because Black people have not historically been well represented in the clinical trials.”

When Buff was diagnosed with lung cancer, the U.S. Preventive Services Task Force recommended screening for people who were 55 and older and had a smoking history of 30 “pack years,” which means the person smoked an average of one pack of cigarettes a day for three decades. Buff made the cut. If Buff had the same conversation with his doctor one year earlier, he would not have qualified for the CT scan that detected a nickel-sized growth on his left lung.

But a 2019 study published in JAMA Oncology found that under those parameters, 68% of Black smokers would have been ineligible for screening at the time of their lung cancer diagnosis, compared with 44 percent of White smokers. In 2021, the U.S. Preventive Services Task Force lowered the recommended screening age for lung cancer to 50 and reduced the number of pack years to 20.

The new guidelines make 8 million more Americans eligible to be screened. But that’s not the only problem that needs to be addressed, said Dr. Gerard Silvestri, a lung cancer pulmonologist at the Medical University of South Carolina.

Silvestri co-leads the Medical University of South Carolina’s portion of a $3 million, four-year Stand Up to Cancer grant-funded project focused on addressing lung cancer disparities. Researchers in the multicenter collaboration said better screening rates will improve outcomes in underserved communities.

Perhaps the final hurdle is erasing disparities in who gets follow-up care after screening. A study published in 2020 in the journal BMC Cancer found that Black patients who had been referred to a lung cancer screening program were still less likely than White patients to get screened and that they had longer delays in seeking follow-up care when they did get screened.

Henderson said some patients may mistakenly believe lung cancer is untreatable and simply don’t want to hear bad news. But experts say screening can be used to educate and build trust with patients.

This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Our Weekly coverage of local news in Los Angeles County is supported by the Ethnic Media Sustainability Initiative, a program created by California Black Media and Ethnic Media Services to support minority-owned-and-operated community newspapers across California.

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