‘This is not your parents’ lung cancer’

Lifelong Kentuckian Rochelle Waddell loves the Bluegrass State. But she definitely doesn’t love that it leads the nation in smoking rates, lung cancer incidence, and lung cancer deaths. “Kentucky has been No. 1 in these terrible statistics long enough,” Rochelle says. “I want our state to be No. 1 in something positive—besides basketball—and we’re getting close!”

Like many of the state’s residents, Rochelle has lost family members to lung cancer. For individuals with a substantial history of smoking cigarettes, nothing is more effective in preventing lung cancer deaths than screening and early detection. After nearly twenty years as a nurse with the Appalachian Regional Healthcare system, in 2019 an opportunity arose for Rochelle to accept a new role as a Lung Cancer Screening Navigator. Seeing a way to really make a difference in the lives of her fellow Kentuckians, she jumped at the chance. Her job: to encourage the eligible people in her home state to get screened for lung cancer. She’s already made a difference. “Right now, we’re the state with the second-highest rate of lung cancer screening, just behind Massachusetts. I know we’re going to get to No. 1!”

The program that Rochelle is part of, the Kentucky LEADS Collaborative, was created with a $7 million grant from the Bristol Myers Squibb Foundation. It is an innovative effort to marshal the resources of the entire Commonwealth of Kentucky to reduce the burden of lung cancer on its residents. “LEADS” stands for Lung cancer, Education, Awareness, Detection, and Survivorship, and the comprehensive program entails three key components—provider education, survivorship care, and prevention/early detection—all supported by an administrative core.

Launched in 2014, Kentucky LEADS has already had remarkable results. The individual victories that Carol has helped facilitate have been multiplied in high-risk communities across the state, leading to results that are nothing short of astonishing: a 10% decline in late-stage lung cancer diagnoses in Kentucky, which is likely to translate into a dramatic improvement in five-year survival rates. This success has been noticed by the state’s lawmakers in Lexington: Eager to build on the momentum, in July 2022 Kentucky’s Governor Andy Beshear signed into law nonpartisan House Bill 219, establishing a lung cancer screening program in the Kentucky Department for Public Health. 

A prototype for public health progress

The story of Kentucky LEADS’ success provides a roadmap for any state looking to successfully move the needle on a critical public health issue. Jamie Studts, PhD is one of Kentucky LEADS Collaborative’s Principal Investigators. He explains, “A key part of our success has been our big-tent approach, working with communities and hospital systems across the Commonwealth to create the broadest possible array of partnerships. Working collaboratively with all these organizations statewide helped us win their support for the idea that we really could turn Kentucky from a state known for its devastating burden of lung cancer into a leader in lung cancer survivorship.”

Dr. Studts and his colleagues have been undeterred by daunting challenges, especially in the rural parts of the state, which tend to have more poverty, lower education levels, and a deep distrust of the medical establishment, not to mention a culture where tobacco use (and lung cancer) is deeply ingrained.

Rochelle’s colleague Carol Ison faces these challenges daily in her role as a Patient Navigator Assistant. “I deal every day with patients who have difficulty with transportation, or problems with their insurance, or fear from not understanding the screening test – which is quick and completely painless. My biggest challenge is to help them understand the process so that they are more likely to come to their initial appointment and to the follow-up appointments which are so important.”

A further obstacle is the stigma associated with lung cancer. Thoracic surgeon Timothy Mullett, MD, also a Principal Investigator, explains: “I've been treating lung cancer patients in Kentucky for 26 years. It’s a group of people who have been yelled at for years: ‘Why don’t you quit smoking? Don’t you know how bad it is for you?’ No one has ever reached out to these people in a helpful way. As a result, sometimes they resist being screened because they feel if they have cancer, they are just getting what they deserve. But treatments have advanced tremendously in the past few years, even for late-stage cancer. There is not a single aspect of this disease where we don’t have an innovation that can contribute to a complete transformation in the outlook. Our message to the people of Kentucky is, ‘This is not your grandparents’ lung cancer.’”

Jennifer Knight, DrPH, who completes the trio of Kentucky LEADS Principal Investigators, echoes this sentiment. “People who would have been hopeless now have hope. Because with empathy and screening, we can often do something about this cancer before it gets to the point where the options are limited. Our goal is to transform attitudes from fatalism and despair to hope and worthiness, and it all hinges on driving the uptake of lung cancer screening.” 

New tech sparks change

Before 2013, screening for lung cancer wasn’t a widely accepted medical procedure. That was the year the U.S. Preventive Services Task Force first officially recognized the benefits of screening following publication of the landmark National Lung Screening Trial. Lung cancer screening involves a 15-second low-dose computed tomography (LDCT) test that delivers a dose of radiation that is more than a traditional chest X-ray. The guidance of the USPSTF meant that insurance companies would start covering the test as part of insurance plans. Today, the USPSTF recommends that adults aged 50-80, with a 20-pack year smoking history, who currently smoke or have quit in the past 15 years, should be screened annually. (A pack year is calculated by multiplying the number of packs smoked a day by the number of years a person has smoked.) In Kentucky, there are approximately 400,000 individuals who meet these criteria, out of a total population of 4.5 million. In 2020, 18 percent of the eligible population were screened, three times the national rate.

“Our secret sauce is the community engagement, the number of diverse partners we work with and the extensive relationships we’ve developed with them,” Dr. Studts points out. “It’s a near perfect merger of passionate informed academics and clinicians with engaged and valued community partners who really rallied together to make this change happen in Kentucky, and it wouldn’t have been possible without that initial grant from the BMS Foundation.”

“It’s all about saving lives,” says Rochelle. “We’ve had completely asymptomatic patients come in for screening and detected early-stage cancer, and that gives them a dramatically better chance for a positive outcome.” For her, Kentucky LEADS is rooted in the values of her community. “We’re very closely knit here in Kentucky. We know our neighbors, and we want to take care of each other however we can. One way to do that is to make sure that our friends and family members who need to be screened for lung cancer, get screened. That’s what we do here in Kentucky. We take care of each other.”