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cW Chat: Heidi Nafman-Onda and Dr. Pierre Onda
HEIDI NAFMAN-ONDA
Heidi Nafman-Onda and Dr. Pierre Onda thought of themselves as well-versed in their well-being—until Heidi was unexpectedly diagnosed with inoperable stage III non-small cell lung cancer. What started as one couple’s search for support has evolved into a nationwide awareness campaign, The White Ribbon Project, rewriting the narrative of a stigmatized disease.
What led to your diagnosis?

Heidi: I wasn’t experiencing any respiratory symptoms. I did have a twinge on my lower left side, which reminded me of ovarian cysts I’d had. I thought I should have it checked. What came back was a total shock to us. I had lung cancer and it was grim. Our heads were spinning but when we met with the oncologist, we were given so much more hope. He had told us about immunotherapy FDA approved just one month prior to my diagnosis. I responded well to it after chemoradiation. No cancer treatments at all now since January 2020, and as of my last scan in May 2021 there’s no evidence of disease.

Why do you believe your diagnosis is part of a public health failure?

Heidi: I have a background in health education but I didn’t know that anyone was able to get lung cancer. What we learned through the media and public health messaging was that the only way somebody was at risk for lung cancer was if they had a history of smoking. I’ve never touched a cigarette. 

Dr. Pierre: Of the population that’s eligible for lung cancer screening, only about 10 percent get it in the United States. Let’s increase the cancer screening rates. That’s going to demand a partnership between advocates, physicians, public health officials, the media. It’s important. That’s what contributed to improving cancer screening rates for breast cancer, colon cancer, prostate cancer—we could do the same.

Heidi: The awareness that has been out there is preventative—so, ‘Don’t smoke and this won’t happen to you.’ But that’s not true. I started meeting more and more people through the White Ribbon Project—we’re talking people in their early 30s who were athletes who have advanced stage lung cancer because no one thinks to screen them or even make them aware of the possibility.

Can you describe the moment you decided to make and hang your first white ribbon?
Heidi: It was after months of working with other advocates to engage our cancer centers and getting dismissed and ignored [by centers]. As we were getting closer and closer to Lung Cancer Awareness Month, I had one particularly hurtful rejection. I broke down crying. Pierre had taken up woodworking, and I told him, ‘I just want you to make me a big white ribbon out of wood and I can put it on our front door.’ I didn’t have to ask permission to do it. I didn’t even know who would see it but at least I’d have a little more control. Dr. Pierre: I had felt very powerless at the time of diagnosis. I am a physician, and I felt like I couldn’t help my wife. The ribbon let me feel like I was alleviating the stress and anxiety she was experiencing. Now it’s morphed into this emotional experience because for every ribbon we make, we use the original ribbon as an outline. After I make them, I realize this is going to someone who has a deep connection with lung cancer—a survivor or their loved one—and all these emotions come. It gives us a sense of purpose and fulfillment. People have different coping skills to deal with what they’re going through, and it’s perfectly fine to remain private. But for us, this helps.
Heidi: People started posting photos of them with their ribbons, and I noticed that no one looked ashamed to have lung cancer. This is something that helps us, helps this stigma. We’ve made over 700 free ribbons since October 2020. Now we’re teaching people across the country how to make them and get them to the survivors, advocates, caregivers and cancer centers. We have cancer centers proudly displaying them and engaging with their community. That is what we need.
You received a devastating and shocking diagnosis. Now it’s blossomed into this sense of community and opportunity for real change. How has seeing that growth felt?

Heidi: I get a bit emotional. It’s incredible to see how this has spread and how people feel this confidence and are finding community. I felt very alone at the beginning. It feels so good that others like me have a voice and understand that they don’t have to hide—in fact, it’s the opposite. Their stories and voices are so important. These are real people who are human beings who are suffering and have been made to deal with a decades-long campaign that we shouldn’t show ourselves, that this is a death sentence. The outlook for lung cancer has been so dismal for so many years that efforts or survivorship skills have just not been explored but now it’s like, ‘We’re surviving. So help us. Give this cancer attention that is long overdue.’

For more information on The White Ribbon Project, visit thewhiteribbonproject.org.

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