The White Ribbon Project: The Fight Against Lung Cancer Stigma

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The White Ribbon Project: The Fight Against Lung Cancer Stigma

Patient Liz Dagrossa shows off white ribbons with nurse Christopher Jennings (left) and medical oncologist Gregory Riely (bottom right). Community-built ribbons (top right) are ready for White Ribbon Project conference attendees.

It would be hard to miss the pink ribbons that are scattered across neighborhoods in October for breast cancer awareness, or the light blue ribbons in September for prostate cancer. Now, there is a national movement to spread white ribbons everywhere in November to promote lung cancer awareness.

More attention and understanding of this disease are critically important, say advocates: Lung cancer is the number one cancer killer, yet it receives a fraction of the funding of other cancers. Liz Dagrossa, a patient currently being treated at Memorial Sloan Kettering Cancer Center, says there is a stigma and a lack of compassion toward people like her.

The White Ribbon Project

One fall day in 2020, Liz saw a Facebook post about a new organization called The White Ribbon Project, whose goal is to spread awareness and change the thinking about lung cancer. The project encourages people to proudly display white ribbons. “The message is that anyone with lungs can get lung cancer,” says Liz. “Whether you are a person who currently, formerly, or never smoked cigarettes, patients diagnosed with lung cancer deserve the same care, compassion, and treatment.”

Liz contacted the project’s founder, Heidi Onda, immediately to see how she could get involved.

Patients can experience guilt or shame, and can even feel as if they are “being chastised” by others after they receive a lung cancer diagnosis, says Liz. “There aren’t a lot of lung cancer patients that will state they have lung cancer, unless directly asked,” she explains.

Liz quit smoking more than 15 years before her diagnosis. Yet, when speaking to others about her cancer, she was almost always questioned about her smoking status and felt the need to defend herself by making it clear she doesn’t smoke. She believes the fact that so many lung cancer patients are asked that question points to the lack of awareness and education surrounding the disease.

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Change Is Happening

MSK has long been involved in the work to decrease the stigma around lung cancer, including active participation in the National Lung Cancer Roundtable, an American Cancer Society–sponsored organization dedicated to improving outcomes for people affected by lung cancer. MSK psychologist Jamie Ostroff, who also serves on the Steering Committee of the Roundtable, and behavioral scientist Smita Banerjee were recently awarded a grant by the National Cancer Institute to train oncology care providers in the United States on how to reduce lung cancer stigma in patient-provider interactions, as well as in Nigeria to test if the training can be effective globally.

The unfortunate reality is that healthcare providers themselves can unintentionally perpetuate the stigma when conducting assessments of tobacco use.

“We focus mainly on training providers on how to take a smoking-related history in a way that is empathic and nonjudgmental,” Dr. Ostroff says. “The stigma contributes to people’s reluctance to undergo lung cancer screening tests and enroll in clinical trials. People may even avoid seeking care for symptoms.”

Dr. Ostroff says that the stigma around lung cancer is a result of the historically poor prognosis and its close association with smoking. While smoking remains the leading preventable cause of lung cancer, there are also 13 other cancers smoking can cause. Yet lung cancer is stuck with the stigma.

The prognosis for lung cancer patients is improving greatly. Now there are tools for early detection and more lung cancer survivors than ever before. Researchers tracked a 41% decline in lung cancer–related deaths from 1991 to 2018.

Eliminating the stigma will save even more lives by empowering people to speak up and get help, says Dr. Ostroff. “We’re at a very exciting juncture whereby we’re moving from describing and understanding lung cancer stigma to actually doing something about it,” Dr. Ostroff says.

The White Ribbon Project

Behavioral scientist Smita Banerjee (left) and clinical health psychologist Jamie Ostroff (right) hold white ribbons at their October 8, 2021, conference.

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Banding Together

After receiving their grant, Drs. Ostroff and Banerjee held a conference this past October to present their empathic communication skills training module to a group of physicians, researchers, nurse practitioners, patient advocates, and members of MSK staff. To reinforce the message of lung cancer awareness, Liz held what The White Ribbon Project calls a “build” to create luminous white ribbons for each conference attendee.

These builds are at the heart of The White Ribbon Project; the act of creating the ribbons also creates community. Liz made ribbons for the MSK conference in her backyard with her family group. “It just felt good to watch them work on it together — everyone was happy. I could just feel the love,” she says.

Moving from feeling isolated to having a community focused on a common mission has been a powerful affirmation, says Liz. She notes that she has a growing circle of friends she has never met face-to-face, but they share a bond.

“That feeling is just incredible,” she says. “Change happens when the people stand up and make noise.” Dr. Ostroff adds, “My white ribbon inspires me to do my best work to support patients and families affected by lung cancer.”

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