Hope to Lung Cancer Patients through Education & Research

By Jimmy Tomlin

Kim Norris remembers the days when lung cancer was considered the redheaded stepchildof the cancer community. Underfunded and under-Jim-&-Kim-DATR-2016researched, lung cancer took a back seat to almost every other form of cancer, and Norris—president and co-founder of the Lung Cancer Foundation of America—took exception to what she saw.

“We would go to these big research meetings, and the lung cancer research group would be back in a small room somewhere, while all the others would be in these big halls with hundreds of people,” recalls Norris, a successful management consultant. “Now, lung cancer is in those giant halls with hundreds of people, which is good, because you want those new, up-and-coming researchers—you want them to pick lung cancer, and right now, it’s becoming the hot ticket in the research world. Luckily, lung cancer has had some major breakthroughs, so this is the place to be.”

That’s a far cry from 1999, when the death of her husband, Roy, to lung cancer led Norris into a life of advocacy. She and two lung cancer survivors—David Sturges (a 13-year survivor) and Lori Monroe (who survived 13 years until her death two years ago)—met when they were patient advocates for the NCI’s Lung SPORE (Specialized Program of Research Excellence), trying to address the lack of sufficient funding for lung cancer research. They agreed the insufficient funding contributed mightily to the poor survival rate for lung cancer, and as a result they joined forces to establish the Lung Cancer Foundation of America.

“Our motivation was to fund transformative lung cancer research, because we were tired of seeing lung cancer researchers having to fight for every penny just so they could keep their labs open,” Norris says.

That meant spending a lot of time in Washington, D.C., bending the ears of senators and members of Congress as they lobbied to raise lung cancer’s national profile, underscoring the need for more funding. They spent long hours sitting on panels and committees, and attending research meetings.

ASCO 2016 - 20160605 - SU2CAccording to Norris, the organization’s three-pronged mission includes raising funds for research, increasing awareness of the disparity between funding for lung cancer and the disease’s poor survival rate, and serving as a liaison between lung cancer researchers and patients.

“We feel our niche is a little narrower than a lot of (advocacy organizations),” Norris explains. “We don’t do patient support. A lot of organizations do a brilliant job of that, but we try to do patient education—we try to be a liaison between the lung cancer research community and the lung cancer patient community.”

The organization’s website (LCFAmerica.org) includes a section for patients in which top lung cancer researchers answer a wide variety of questions: Do I need a second opinion? What are the latest treatments available besides chemotherapy and radiation? What do I need to know about genetic mutation testing? What do I need to know about clinical trials?

One obstacle Norris encounters frequently is an age-old obstacle that still hasn’t gone away yet—the stigma of lung cancer.

“After all the years I’ve been doing this, now I’m finally getting people telling me that lung cancer is not necessarily caused by smoking,” Norris says. “Before, when I told people about my husband having lung cancer, the first question out of anybody’s mouth was, ‘Did he smoke?’ I wanted to say, ‘What difference does it make? Thanks for the empathy, compassion and support.’ I guess we’re slowly getting there, but the stigma is still pretty prevalent, and that raises a challenge in fundraising.”

The good news, though, is that great strides are being made in the battle against lung cancer—strides that should continue as long as the increase in funding continues.

“I am blown away by the progress that’s been made,” Norris says. “When we first started, we were trying to talk about hope when there wasn’t much hope. And now, our cup of hope runneth over.”

She points to her own family’s experience with lung cancer nearly 20 years ago to show how much progress has been made.

“When my husband was going through this, the only treatments available were chemo and radiation,” she says. “He went through five clinical trials, and some of them extended his life a little bit, but not much. But now, it’s almost hard to keep up with all of the advancements, which is exciting. Now there’s targeted therapy, immunotherapy, stem cell therapies, liquid biopsies—all of these will have a dramatic impact on the lives of lung cancer patients.”