Imagine a 55-year-old woman who is:
- Devoted to wellness and fitness
- A person who has never smoked
- Experiencing zero respiratory symptoms
- Married with a family
Then, a scan for an ovarian cyst causes her to receive a phone call from her doctor telling her:
- She has Stage 3A lung cancer
- The prognosis is not good
- The cancer is inoperable
- She has 4-6 months
- She needs to get her affairs in order
This is just part of the amazing story of Heidi Nafman-Onda. This was 4 years ago and through immunotherapy treatments she is now showing no evidence of disease. As incredible as this is, that is only part of the extraordinary story.
Radonova recently had a chance to sit down with Heidi after hearing her story at the Rocky Mountain AARST meeting in Colorado. Heidi and her husband, Dr. Pierre Onda, are on a mission to change the lung cancer story. They started the White Ribbon Project in 2020 during the pandemic. It is now a 501(c)(3) charitable organization that promotes lung cancer awareness and is changing public perception about lung cancer.
How did The White Ribbon Project come about?
There is an unspoken stigma about a person with lung cancer. People assume if you have lung cancer that you must be a smoker or used to smoke, and therefore you brought lung cancer upon yourself. “There is no shame in having lung cancer,” says Heidi. “We are all in this together.” She became angry about the negative stigma around lung cancer and channeled her frustration into creating a new narrative with The White Ribbon Project.
Pierre created the first white ribbon out of wood for Heidi to hang on the front door of their house. Heidi wanted the world to know that someone in her home had lung cancer. From there, these white ribbons have become symbols of lung cancer awareness in all 50 states and 33 countries (and counting!). The ribbons are made out of wood “because I thought they would last longer than me,” says Heidi. The ribbons are painted white with a “Lung Cancer Awareness” sticker on the front. The back of the ribbon is left unfinished so that the creators of each ribbon can sign it. This makes the ribbons even more meaningful.
What has been surprising?
Lung cancer kills more people than breast cancer, colon cancer and prostate cancer combined. However, it does not get the same attention.
Radon is a leading cause of lung cancer. Heidi and Pierre tested their home and found radon levels were high. They have mitigated their home, but Heidi remains concerned about the time her children spent in the basement growing up.
“It’s surprising that we have requirements for safety devices like smoke detectors, seat belts, and carbon monoxide detectors but people don’t regularly test for radon,” says Heidi. “In addition to screening for other environmental hazards in your home, every home should test for radon.”
“Even for me as a Primary Care Physician, radon testing wasn’t on my radar for patients that didn’t exhibit obvious symptoms,” says Pierre. “The level of toxicity for radon needs to come to the forefront as a health hazard just like lead and asbestos. It’s important for the medical community to know more about it and to continue to collaborate about lung cancer.”
What can people do?
In the future, more needs to be communicated in the mass media. The White Ribbon Project is well known in our community, but we need coverage on a national television outlet. This will help with advocacy which can also lead to more lung cancer government funding.
Information and educational literature will also increase awareness. This could be brochures in physicians’ waiting rooms, webinars or seminars provided by healthcare organizations, lung cancer screening and protocol information added to medical websites, etc. All lung cancer pamphlets should have a section about testing for radon in your home.
Lobbying efforts for both lung cancer screening and radon testing requirements will help change health plans and state laws in favor of protecting people from the disease. Gaining the attention of state governors or city mayors through proclamations are another avenue to boost awareness.
What do you want everyone to know about the White Ribbon Project?
“This started as one person with lung cancer and now The White Ribbon Project is a movement.” I want everyone to know that “anyone with lungs can get lung cancer,” says Heidi. “And there is hope, even in the late stage.”
Heidi and Pierre – we want everyone to know this, too.