The numbers are grim. Lung cancer kills more Americans than breast, colon, and prostate cancers combined. The five-year survival rate is only 18 percent. And North Carolina has one of the nation’s highest rates of lung cancer — more than 67 new diagnoses per 100,000 people in 2015, the most recent year for which the Centers for Disease Control and Prevention provides data.
Lung Cancer Initiative, a Raleigh organization, is fighting back against the disease across the state. “Our mission,” says Paige Humble, LCI executive director, “is to save lives and provide support to those affected by lung cancer.”
LCI’s strategy has four key areas of attack: research, education, awareness and access.
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With five annual fellowships of $25,000 each, LCI supports young scientists to help jump-start their careers. “The goal of those [grants] is to really get researchers into the field of lung cancer,” Humble says. “And the hope is that they’re going to go on and receive even more funding from national institutions.”
A recently announced sixth grant will support a project focused on “innovation and collaboration in lung cancer research,” Humble says. The recipient could be announced as early as the end of this year, she says.
Since 2008, the group has provided more than $1.6 million for lung cancer studies, Humble says. For the past three years, LCI has made matching grants in partnership with the V Foundation for Cancer Research to support projects such as a study into lung cancer-related disparities among people of different ethnicities.
But scientists are not the only ones LCI aims to help. Through its Expert Speakers Series, the group fosters presentations in cancer centers and other community venues to share insights into lung cancer with the general public.
A constant need, Humble says, is to raise awareness about the disease. For example, she notes, lung cancer has become so strongly linked with smoking in the public perception that many people think only smokers can get the disease. Not true, Humble says. “If you have lungs, you can get lung cancer.”
Jon Gorman of Raleigh learned that when his lung cancer was misdiagnosed as reflux disease for more than six months. Because Gorman had never smoked, he says, his doctor did not order a chest X-ray. By the time his cancer was diagnosed, it had reached Stage 4, spreading to other parts of his body. He was told he had perhaps a year or two to live. His oncologist referred him to LCI for help finding the crucial resources beyond medical care that he would need as he battled the disease.
“What mattered to me, when I first got diagnosed, was [to be able to] ask questions,” Gorman says. “Where do you go for certain things? They almost always had an answer. And if they didn’t, they would find out or put you in touch with somebody who did. …
“And when you’re going through this, that’s a lot of what you want. Especially initially. It’s just hell. Everything’s coming at you. [The doctors] tell you, you know, you’re not going to live. You get all these medical bills. It’s just one thing after another. It’s like getting kicked and kicked and kicked.”
Gorman recently celebrated five years since his diagnosis — a significant milestone for cancer survivors. He lauds LCI’s work to encourage people to look out for and address lung cancer symptoms. “If there was more awareness,” he says, “I think that there would be fewer deaths.”
Once diagnosed, though, patients also need access to care. LCI helps with that, too. Since 2013, the organization has been making $50 gas cards available through patient navigators and cancer centers. This year, an LCI grant made it possible for a group of lung cancer survivors to attend a three-day Wind River Cancer Wellness Retreat in Raleigh free of charge.
In the coming year, Humble would like to extend LCI’s reach into the few North Carolina counties where it does not yet have a presence. “We’re looking for advocates that live in those counties,” she says. “And for those patients that are traveling for treatment, just to make them aware of the gas card program.”
Like many survivors helped by LCI, Gorman now acts as an advocate and an empathetic ear, especially for those newly diagnosed.
“I tell other patients who get diagnosed, ‘Look, just get involved [with LCI] somehow, because they’re going to make your life easier,’ ” Gorman says. He and his wife both volunteer, helping others navigate the confusing and difficult journey of treatment.
Humble says she welcomes volunteers. “Regardless of how you’ve been impacted by lung cancer, regardless of your skill set,” she says, “we need folks that have all kinds of skill sets.” Volunteers can help organize the group’s 5K races in Raleigh, Charlotte and Greensboro, or the annual spring gala. They can distribute educational materials, or even work scheduled hours in the organization’s office.
“We also have internships for public health students and students with a communications background,” Humble says. “We always have opportunities for those types of students.” Though unpaid, interns can get college credit.
To Gorman, the most important goal is visibility. “I just think awareness gets the discussion going,” he says. “It’s a slow trickle of education that saves lives.”
Lung Cancer Initiative of North Carolina
Donations: Money raised is used to fund the research of young scientists, organize a speaker’s series, provide educational materials to doctors and patients, give gas cards to patients, and for grants to institutions to improve access to lung cancer screening, treatment, clinical trials, molecular testing or precision medicine for uninsured or underinsured individuals.
$10 would buy a newly diagnosed patient an educational packet including a lung cancer journal and other resources to help them with their journey.
$20 would help to support a lung cancer survivor’s participation in a LUNGe Forward 5K event.
$50 would buy one gas card to help a lung cancer patient access appropriate treatment.
Volunteers: Contact the LCI staff to discuss your interests and potential opportunities. Volunteers are needed in the Raleigh office to provide support, on committees for the Evening of Hope Gala, 5K events and other programs, at health fairs to raise awareness by sharing information about lung cancer. You could also host your own awareness or fundraising event — from bake sales to golf tournaments.