“I didn’t know that you smoked.” That comment seemed to follow Heidi Onda every time she disclosed her stage 3 non-small cell lung cancer (NSCLC) diagnosis to friends, family, and acquaintances.

Heidi was diagnosed in 2018 at age 55. She lives in Colorado and is trained as a fitness instructor and health educator. She has never smoked cigarettes. “​​I just couldn’t believe that I was being asked this question,” she told MyLungCancerTeam.

Although cigarette smoking is the top risk factor for lung cancer — accounting for 80 percent to 90 percent of lung cancer deaths in the United States — not everyone with the condition smokes or has ever done so. Other risk factors for lung cancer include secondhand smoke, exposure to air pollution or other harmful chemicals, radon, and family history.

The strong causal relationship between lung cancer and smoking, coupled with aggressive public health campaigns to educate the public about the danger of smoking, have contributed to stigma against people with lung cancer.

Staying Quiet About Lung Cancer

In the early days after diagnosis, Heidi kept her condition a secret. “I was very quiet about it,” she said. “I wasn’t quite sure why I was feeling ashamed of this diagnosis because no one should feel ashamed of any cancer diagnosis or any disease.”

Heidi realized that part of what kept her quiet was lack of a support network. “​​I really couldn’t find the community,” she explained. “When I would ask my health care team, ‘Is there a support group?’ they said, ‘There’s support groups, but you’re not gonna fit in there. That’s not going to be comfortable for you.’”

Heidi eventually found support and connection through the LUNGevity Foundation. “That’s when I started to feel more like I was finding my community and finding my voice too,” she explained.

Starting the White Ribbon Project

Over time, Heidi realized that there was more she could contribute to the lung cancer community. Heidi and her husband, Pierre Onda, a primary care physician, started the The White Ribbon Project in 2020 to give people with lung cancer a voice, to break down stigma, and — as their website states — to raise awareness that “anyone with lungs can get lung cancer.”

The White Ribbon Project distributes white ribbons, a symbol for lung cancer, to people living with the condition, as well as caregivers, medical professionals, or anyone with a connection to lung cancer. The large ribbons come with a personalized note and are intended to show people they are not alone and help spark conversations about the disease.

Heidi and Pierre created the original plywood ribbons out of their garage. They’ve distributed ribbons across the United States and in 26 countries worldwide. Today, volunteers help create and distribute the ribbons. Interested individuals can reach out to the project to learn how to make the ribbons.

“Symbols are important,” Pierre said of the white ribbon. “We are claiming the community. It offers a sense of solace if you start seeing the white ribbon.”

“It was Heidi’s effort to claim and acknowledge that she had lung cancer and to not be ashamed of it,” Pierre added. “And also to be heard. ‘I’m not invisible, don’t ignore me.’ Don’t ignore this disease.”

Tackling Misconceptions

One of the primary goals of the White Ribbon Project is to start conversations about lung cancer, especially about smoking and stigma.

“It didn’t seem responsible to stay quiet because there’s so many misconceptions about lung cancer,” Heidi said. “We could use this question of ‘Did you smoke?’ to turn it into a learning opportunity to teach people that anyone can get this.”

“The images and messaging we’re used to seeing is, ‘If you don’t smoke, this won’t happen to you.’” She added, “I’m a health educator and trained in prevention. If we didn’t know I was at risk for lung cancer, why would people in the general population know?”

Pierre and Heidi also want people to know that a lung cancer diagnosis isn’t hopeless. “There are better treatments. People are living high-quality lives,” Heidi said.

No More Stigma

“Lung cancer has been used as a stamp on your head like a scarlet letter. You really shouldn’t be talking about this, just go and hide,” Heidi said.

There is a lot of “victim blaming in lung cancer,” Pierre explained. “‘You have a history of smoking, therefore you brought this disease upon yourself.’ We reject that. It doesn’t matter whether you have a history of smoking or not, you don’t deserve lung cancer.”

“We’re about awareness, and letting people who are diagnosed know there is a community,” Pierre said. “We’re all inclusive. We want anyone with lung cancer regardless of which type, whether or not they have a history of smoking.”