In fact, nationally, lung cancer claims more lives each year than the next three deadliest cancers combined. It’s the number one cancer killer of men and women in the U.S. Yet most people would be hard-pressed to identify a lung cancer ribbon or recall the last time they joined a lung cancer walk. And there’s a reason for that.

“There’s no story right now,” Weaver says. “It is a disease that is so devastating it simply has few survivors, voices or advocates.”

That’s changing.

Several years ago, the Bristol Myers Squibb Foundation sought to turn the tide on outcomes for lung cancer patients in underserved regions throughout the U.S. Thus began the search for innovators with the goal of developing new strategies to improve lung cancer screening, care and support. The Foundation’s discussions with the Kentucky Cancer Consortium, Kentucky’s comprehensive cancer control program, catalyzed the creation of the Kentucky LEADS Collaborative. Weaver was among the first physicians to lend the group his support.

Kentucky LEADS addresses the full spectrum of lung cancer care. (LEADS stands for Lung Cancer Education, Awareness, Detection and Survivorship.) The three-year initiative, funded by the Bristol Myers Squibb Foundation and moving into implementation now, is a partnership among the University of Kentucky, the University of Louisville and the Lung Cancer Alliance.

“This program brings researchers, clinicians, university experts and local officials together to create a comprehensive program from early detection all the way through survivorship,” Weaver says. “This is a great program, one that we’ve needed for a long time.”

Kentucky LEADS has three main components: provider education; prevention and early detection; and survivorship care. Its programs aim to educate doctors about new tools and treatment options, empower and engage patients in their healthcare, and promote access to high-quality screenings that may create a whole new subset of patients: survivors.

“Screening is one of the biggest shifts in lung cancer care and control since 1964,” says Jamie Studts, principal investigator for Kentucky LEADS, citing the year of the U.S. Surgeon General’s groundbreaking report linking smoking and lung cancer. “We now have the hope of creating a large community of lung cancer survivors.”

By presenting a comprehensive approach that educates patients and engages them in managing their complex condition, Kentucky LEADS is creating a model that others could replicate. Connie White, deputy senior commissioner of clinical affairs for the Kentucky Department of Public Health and a member of the Kentucky LEADS Community Advisory Board, believes the program’s innovations could ripple out beyond Kentucky and even beyond lung cancer. This could drastically change the treatment of chronic disease, she says.

Progress in lung cancer detection and treatment has been, at best, incremental. The 1964 Surgeon General’s report was the first federal milestone. “At that time, the five-year survival rates for lung cancer were 13 percent,” Studts says. “We’re at 18 percent now.”

Merlene Rodgers sits in her kitchen, laughing with her daughter, Dani. Merlene is the lucky anomaly, the one whose symptoms showed before it was too late. 

Thirteen years have passed since Merlene announced her diagnosis in her newspaper column. She described the waves of emotions hitting her at that moment: 

On this, the first day of my knowingly living with cancer, it is not the disease I’m worried about. It is telling my family and friends just how vulnerable we are that tears at the soul.

“I immediately thought, of course, that it would be terminal. I did not know anybody with lung cancer who had survived,” she says now. “So I said, well now, we’ve got to start making plans.” She called a retired minister friend. “You’ve got to shoot me some Scriptures.”

The cancer was stage 2, still operable, and she decided to wait until after the holidays. The doctors removed one lobe from her right lung. Three months later, she was back at work. 

She went in every six months for follow-up screenings. It would save her life. Around 18 months after her surgery, a routine screening found a suspicious node in her other lung. This time, there was no cough.

“I had no symptoms. None. So had it not been for that CT scan, I would not have known there was something going on,” she says. “It was lifesaving, because I had nothing. I thought I had beat it. And then it came back.”

She still goes in for annual screenings. “If you know the risk factors, why wouldn’t you do this small thing? It’s not painful. You go in, lie down, smile if it’s a male technician, flirt a little bit, and get up and leave.” Her last screening, a month or two ago, turned up clean. Ten years clean.

A lot can happen in ten years. Hundreds of columns. A well-deserved retirement. Thousands of prayers. Ten Christmas mornings. One induction into the Kentucky Civil Rights Hall of Fame.

Thanks to lots of prayers and timely medical intervention, Merlene Rodgers can say something few others can—yet.

“I’m a lung cancer survivor. Twice over.”