By Amy Nicole Tangel
Lung cancer survivor, Heidi Nafman Onda said she has a goal to put a white ribbon in every lung cancer patient’s hands so they know they are never alone, and what started as a simple gesture to have a voice has taken life into a growing movement bringing new hope.
In October of 2018, Heidi was diagnosed with non-small cell lung cancer (NSCLC). Initially, she received a phone call and was told with chemo and radiation she would have 4 to 6 months. In a miraculous turn of events, when she met with her oncologist for the first time, he had a totally different story and she was told of a new trial immunotherapy specifically for her stage with, “curative intent.” Three cycles of chemotherapy and thirty radiation treatments later, followed by immunotherapy infusions for one year, in January of 2020 Heidi received the report there was no evidence of disease.
While Heidi did not have an active history of tobacco use and was educated about health, because of the lack of preventative screening for lung cancer she was not diagnosed until late stage.
“That’s our story here. Anyone with lungs can get lung cancer,” she said.
Before The White Ribbon Project came to life, Heidi said she was working with all her might to advocate for better screening and for the public to become aware that anyone who has lungs can get lung cancer. For a cancer that is the deadliest among all cancers, she said the stigma of smoking has taken a detrimental toll on the truth of lung cancer and what is being done for prevention.
When she and other advocates started asking care centers across the country what they were going to do for lung cancer awareness month in years past, Heidi said they were not only unsupported, they were dismissed.
“We were either getting ignored, or dismissed or down-right humiliated,” Heidi said.
One day, the hurtful responses and comments brought Heidi to a point where she said she felt she had to do something, somehow, even if it was just putting a white ribbon on her door. She said nobody could tell her she couldn’t do that, so she asked her husband Pierre if he could make her a ribbon for the front door; Heidi said she was ready to scream to the world she had lung cancer.
“I didn’t have to ask permission from anybody to do this, and it gave me some control back in the process,” she said.
Heidi didn’t start with only putting a ribbon on the door though. She decorated the whole front of their house with tied white ribbons on trees and even the mailbox. She said she took a picture of the scene and put it on a private Facebook page for advocates in Colorado.
From the picture, people started asking about the ribbon on the door and how they could get one. What started out as one became dozens a week Heidi said, but because of the time of the pandemic they were just leaving the ribbons on the doorstep, and she never really got to meet many of the people who would share their pictures and stories on social media taking the ribbons out in the public, to landmarks and to their doctor appointments.
Pierre said it didn’t start out with the vision of a grass roots organization, but it just became more, and they kept getting signs from survivors and caretakers who also felt neglected and alone in some way on their own journeys.
“I think it was more responding to the needs of a community,” he said.
As Heidi and Pierre continued to network it became clear to them they needed to think more broadly and began connecting to other advocates all over the country like Liz Dagrossa from Bohemia, NY. Liz was diagnosed with NSCLC at the age of 53 and 9 years later at the age of 62, Liz said she wakes up every day not thinking she is a patient with cancer.
For years, Liz said she has not only fought lung cancer, but the stigma that it is something she deserves. The reality is that many people who are diagnosed with lung cancer have never actively used tobacco and even if they had; nobody should be treated like they deserve to be sick.
“Nobody deserves this. I don’t care if you were a smoker or not,” she said.
Liz has been actively using her voice to bring awareness to lung cancer through social media and in her local community on Long Island for years. Through her determination and persistence she joined the mission of The White Ribbon Project after seeing a Facebook post and reaching out to Heidi to see how she could get involved. Most recently, Liz and her family started doing their own ribbon building distributing to others locally and she even brought her own treatment team at Memorial Sloan Kettering Cancer Center (MSK) on board in support.
“People don’t even know that the white ribbon stands for lung cancer,” she said.
Before living in Colorado, Heidi and Pierre lived in Los Angeles where she was a health educator with the HIV and Aids community and said the exact same stigma that happened to their community is what is happening to the lung cancer community. Heidi said the fact that the mention of lung cancer automatically leads people to the question of smoking needs to end.
“We are going global now,” Heidi said.
“Ribbon Builds” are now taking place and people are gathering together to make the ribbons including patients, survivors, advocates, families and industry leaders, as well. The feedback that Heidi and Pierre said they have received from countless clinicians who have begun to have discussions with them is that they have felt stigmatized as well not only for their patients, but by lack of funding to treat the disease.
“When you just focus on prevention then I think it ignores the fact that the public, doctors, we as a society have a responsibility for a better early detection, better treatment and for better outcomes,” Pierre said.
One of the biggest things Heidi said she would like to see stopped are the prevention commercials that show such horrible images. She said chances are people who are eligible for screening who see those images are not being scared into screening, they are being scared away from ever wanting to know.
“They need to start showing images of hope, like Liz of 9 years. I’m 3 years and it was very tolerable treatment. I never got sick. I don’t know why, but that didn’t happen to me,” she said.
Impactful people like former NFL linebacker Chris Draft have made The White Ribbon Project a mission in their lives and Draft has become a national spokesperson for the organization having lost his wife to lung cancer. Industry leaders have also taken notice and met with Heidi in Colorado last month; building their own white ribbons to take with them to start their own missions. Heidi said from that meeting alone, 20 countries have already been identified to begin using The White Ribbon Project as a template to educate and unite.
In addition to the support of industry leaders, the International Association for the Study of Lung Cancer (IASLC) has also shown a sign of forward movement and solidarity releasing a language guide to use a first-person language with specific focuses to “Eliminate Blame Language” and “End Stigma.”
When asked what her goal was for Lung Cancer Awareness Month and beyond, Heidi said it is to simply give a lot of love to those that support and continue to distribute as many ribbons as possible with the hopes of continued forward discussions and positive steps towards a cure.
“We are fighting for our lives and we are worth it. We are worth demanding treatment like any other cancer,” she said.
For more information about how you can obtain a white ribbon, become involved or to learn more, visit www.thewhiteribbonproject.org or follow them on social media platforms Facebook and Instagram @thewhiteribbonproject.
Photos courtesy Heidi Nafman Onda & Liz Dagrossa