Lung cancer is the leading cause of cancer death in the United States. Despite this startling statistic, people who live with lung cancer face ongoing stigma and shame.
The American Lung Association says that public health campaigns about the risks of smoking have saved lives.
But these campaigns have also led to the perception that people with lung cancer bear personal responsibility for the condition. This can make people reluctant to seek treatment and reduce their support systems.
The White Ribbon Project is a nonprofit organization aimed at reducing lung cancer stigma and removing barriers to patient advocacy and funding for lung cancer research.
The Project’s founders, Heidi Nafman-Onda and her husband Pierre Onda, spoke with Healthline about the Project’s history, its goals, and how people can get involved.
This interview has been edited for length and clarity.
Heidi: I’m a lifelong health enthusiast, health educator, and fitness trainer. I’m married to Pierre, a primary care physician who recently retired.
We were blindsided by my stage 3 lung cancer diagnosis in October of 2018. I didn’t have any symptoms. It was an incidental finding. I was originally given a prognosis of 4 to 6 months.
At the time, there seemed to be no support systems in place for people with lung cancer. I’ve since found a community, but it took almost a year for that to happen.
When the COVID-19 pandemic hit, we started meeting virtually with patients and caregivers over Zoom. And we decided to start working as a network of people across the country in different cancer centers to strategize for Lung Cancer Awareness Month in November 2020.
Heidi: In early advocacy conversations, we were getting only dismissive responses from potential partners. The last straw for me was an insulting remark from a cancer center: that their white hospital lights and white doctor’s coats are enough daily recognition.
I got very upset. I screamed at Pierre, “I wish you could make me a big white ribbon out of wood.” And he did.
I knew that the ribbon would last longer than me. I could put it on my front door and scream to my little community, my world, that I had lung cancer and I wasn’t ashamed of it.
The ribbon was 2 feet tall and 1 foot wide. I took a picture of it, and I put it on a private Facebook page for other advocates in Colorado. I also tied ribbons around my trees and my mailbox.
People responded by asking for ribbons for their own houses. And they started doing some pretty incredible things with them, like taking pictures with their doctors and putting them on all kinds of social media.
I thought to myself, “No one looks ashamed in these pictures.” Those photos eventually got posted to public Facebook pages, and people across the country started requesting ribbons.
Now our ribbons all over the world. They’re in all 50 states and 33 countries. It’s been amazing to see the medical community asking for them as well.
The White Ribbon Project’s mission is to change the public perception of lung cancer.
Rewrite the lung cancer story
Heidi: Anyone with lungs can get lung cancer, and no one deserves it. Prevention of lung cancer requires early detection and screening.
But messaging around lung cancer prevention seems to say, “Don’t smoke, and lung cancer won’t happen to you.”
Pierre and I are both trained in disease prevention. We had no clue I could be at risk for lung cancer. There are thousands of people I know throughout the world who are just like me.
The mindset needs to shift. Yes, cigarette smoking is bad for your health. But it has been solely attached to lung cancer in the media, and public health messaging has taught us to have a lack of empathy and compassion for people with the disease. And that’s not OK.
Stop personal blame
Pierre: In my 30 years of medical practice, I cannot recall a single patient who smoked who wanted to continue smoking. And most of them had tried to quit many times.
Let’s not blame those who develop lung cancer. People with a history of smoking indeed have the highest risk of developing lung cancer.
But we want to make sure that everyone, including physicians, nurse practitioners, and other healthcare professionals, know that people without a history of smoking can also develop lung cancer.
Increase screening rates
Pierre: Patients have to be referred for lung cancer screening, and it’s primary care physicians who most frequently determine whether or not a person qualifies.
There are so many stories of people without a history of smoking — young people in particular — presenting to their doctors with a monthslong chronic cough or some other symptom, and no one even considers getting a chest X-ray because they’re not thinking about lung cancer.
Nationally, lung cancer screening rates are below 6% for those who are currently at high risk. In comparison, colorectal cancer screening rates based on recent guidelines are
If lung cancer is caught early, 5-year survival rates can approach 59%. But currently, the 5-year survival rate for lung cancer is around 23%. That’s because the vast majority are caught at late stages.
I’m passionate about getting in front of primary care physicians in any way that I can to promote lung cancer screening.
Another opportunity is reducing disparity of care. We’re focusing on communities and people who are at the highest risk who don’t have access to appropriate thoracic oncology centers for screening.
Pierre: We’d like to see public health departments or other nonprofit organizations develop lung cancer awareness programs that are focused on promoting screening in rural communities or other interventions.
I think there are many opportunities for us and other advocates to apply for grants and develop projects, which ultimately lead to some type of benefit to those affected by lung cancer.
Also, we aim to increase collaboration with the medical community, the research community, industry, and other nonprofit organizations to become much more effective at lobbying for more research funding for lung cancer.
That includes basic science research. We can’t emphasize enough how important basic research is. Because it’s not one disease. There are many different variations of the disease, and they all require a different approach.
Pierre: The White Ribbon Project began as a grassroots organization that simply wanted to activate people and get the message out about lung cancer awareness. Now it has evolved.
One of our main goals is to recruit more people into lung cancer advocacy and encourage them to use whatever skill set they have in the work. For example:
- If you’re someone who’s media savvy, find a way to get the story out to the media.
- If you’re skilled in political lobbying, help us work to increase government funding for lung cancer research.
- If you’re artistic, use your skills to somehow get the message through.
It’s all about increasing lung cancer awareness, which ultimately includes any activity that leads to action that results in better survival rates and quality of life for people with lung cancer.
Heidi: There’s a spectrum of advocacy. You could hang up a white ribbon like I originally did and put it on your front door. That was a huge step for me.
Or you could take your ribbon to Capitol Hill and get it into the hands of a legislator. We have a lot of this happening around the country right now.
- Display a white ribbon in your community to raise awareness of lung cancer.
- Show empathy and compassion toward everyone living with lung cancer.
- Promote lung cancer screening with your physician.
- Develop or join a lung cancer awareness program in your community.
- Use your personal skillset to advocate for a better quality of life for people living with lung cancer.
Heidi: The White Ribbon Project has helped to unify the lung cancer community a little better.
We still have a ways to go. There are different subtypes of lung cancer, and people have tended to stick with a particular mutation that they want to advocate and raise funds for, for example.
Also, people who have smoking histories often still feel like they don’t want to speak up. We need to include everybody. We need to have empathy for people who are living with an addiction.
And we must understand that having that shame, carrying that around plus dealing with a lung cancer diagnosis, is really horrible and not acceptable.