In the last year, an estimated 234,000 Americans were diagnosed with lung cancer. As with many other cancers, a lung cancer diagnosis requires patients and their families to navigate difficult decisions about treatment and care. For people with lung cancer, there is an additional burden to overcome: coping with the social stigma of their disease.

“When people learn I have lung cancer, they often ask me if I smoked,” said Don Stranathan, a lung cancer advocate and nine-year survivor. “Not all people with lung cancer smoked, and not all smokers develop lung cancer. Yet people with lung cancer are asked to admit to these habits as if this disease was something we deserved.”

There is significant evidence suggesting a stigma against lung cancer patients. A study from The Lung Cancer Project revealed three out of four people have a negative attitude about lung cancer compared with breast cancer, and the majority of people associated lung cancer with shame, guilt and hopelessness. These beliefs are consistent across the general public, people with lung cancer, their caregivers and even healthcare providers.

Unfortunately, research has shown these perceptions may be a factor in many people with advanced lung cancer never receiving care.

“No one deserves lung cancer, and shame and hopelessness should not prevent people from seeking care.”

The Lung Cancer Project was started by scientists at Genentech, a company that researches and develops medicines for cancer, in response to a shocking statistic: 68 percent of people with advanced cancer who never receive treatment have lung cancer, compared to only about 5 percent of people with breast cancer.

For the past six years, the nearly 20 advocacy and industry organizations comprising The Lung Cancer Project have been collectively studying the social psychology of lung cancer. 

“We founded The Lung Cancer Project to identify, understand and remove stigma and other barriers faced by people with lung cancer so that they could receive the care they deserve,” said Holli Kolkey, founder of The Lung Cancer Project and director, Corporate Relations at Genentech. “We now know that lung cancer is many diseases and that some treatments can be personalized to help certain people experience a better outcome. More needs to be done to improve survival rates for people with lung cancer, but we’re headed in the right direction.” 

The Lung Cancer Project partnered with researchers at the Fred Hutchinson Cancer Research Center to quantify overall survival gains from 1990 to 2015 and determine how survival outcomes could be improved even further by increasing treatment rates. They found that even a 10-percent increase in the number of people with advanced lung cancer getting treated with currently available medicines could add more than 39,000 years of life across the entire population compared to what was possible in 1990, when no anti-cancer treatment was available for these patients.

“With improved understanding of lung cancer and better access to screening for people at high risk, we can detect lung cancer in its earlier, more treatable stages and ensure that they receive the treatment they need,” Kolkey said. “No one deserves lung cancer, and shame and hopelessness should not prevent people from seeking care.”

To learn more or participate in The Lung Cancer Project, visit www.thelungcancerproject.org or follow it on Twitter at @lungproject.