Six years ago today, January 17, 2015, Bayard Winslow “Chip” Kennett II, a Conway, NH, native and a former Capitol Hill staffer for U.S. Senator John E. Sununu (New Hampshire) died of lung cancer. He was a non-smoker. He was 34 years old, married, with two small children. In May of 2014 he gave moving first hand testimony to the US Senate special committee on aging with ranking member Susan M. Collins (Maine) for whom he had also worked.
I did not know Chip Kennett, but his death affected me because just a year earlier I had met cancer research evangelist Dave Bjork. He, too, was diagnosed with lung cancer in his early 30s. He, too, has never smoked and as a survivor has become a real advocate for putting money directly in the hands of researchers and for raising awareness of the work that needs to be done. The stigma around lung cancer as a smoker’s disease has hampered progress and yet, more than 20 percent of all lung cancer patients today are non-smokers. As Chip testified on Capitol Hill:
“…lung cancer kills more people than breast, colorectal, pancreatic and prostrate cancers combined. According to NCI, approximately 160,000 people will lose their lives to lung cancer this year (2014), that’s the equivalent of a jumbo jet falling out of the sky every single day.”
Today, I’d like you to meet Heidi and Pierre Onda, founders of the recently-launched White Ribbon Project. Their hope is that with increased awareness there will be an increase in funding for research. Dave asked me to share Heidi’s story because it resonates with so many in the cancer community and just the other day, Friday, January 15, within sight of the presidential inauguration, the president-elect announced his deputy press secretary as TJ Ducklo who was diagnosed a year ago with stage 4 lung cancer, is also in his early thirties and never smoked. His tumors have mutations that made him a candidate for newer targeted therapies and he has had encouraging results. And that’s what needs to be talked about. You can hear Heidi and Pierre talk about their experience and newfound passion for patient empowerment in their own words in this video:
Today, lung cancer, the third most common cancer in the United States, kills over 200,000 people annually. Since talking to Heidi & Pierre, I’ve been thinking, in contrast, about the news stories we’d see if one full jumbo jet did fall out of the sky each and every day for a year. Today is a good day to raise awareness of The White Ribbon Campaign and shed that old characterization of the disease that’s still prevalent in too many conversations.
Heidi Onda Is a health educator and fitness trainer and her husband Pierre is a primary care doctor. They are “a family based in prevention” as Heidi described her former world to me. When she was diagnosed two years ago, friends and neighbors approached her saying they didn’t know she smoked. She doesn’t. She has never smoked and she was surprised at the onset of treatment at how little information was available to patients about lung cancer and targeted therapies. There’s been a lot of progress In treatment but sitting in a cancer waiting room, she rarely found Information and pamphlets that spoke to non-smoker lung cancer patients like her.
Pierre Onda likes woodworking as a hobby. Heidi’s White Ribbon is a two-foot-long by one-foot-wide wooden board cut out in the shape of a large white ribbon with the simple message: Lung Cancer Awareness. She placed this highly visible statement on her outside door because she wanted people to know she had lung cancer. She wanted to swiftly bypass the often defensive first conversation of “no, I’ve never smoked.”
She has been pleasantly surprised by the empathy and the sudden reach of this homegrown, grassroots effort. No big foundation advertising or backing but a real sense of empowerment to change the conversation by humanizing and personalizing the stories of patients and the physicians who treat them.
During a recent tele-med review with her radiation oncologist, she was asked about the ribbon. She had a lot to share. The doctor at the other end of the screen closed their session by asking for three to be made for their office.
The goal of the White Ribbon Project is to raise awareness of all the resources available to patients and their local physicians, to improve access to information and networks, to more openly help people recognize that anyone with lungs can get lung cancer.
Two things Heidi would love to see happen in 2021:
- The American Cancer Society saying loudly & clearly Anyone with Lungs Can Get Lung Cancer
- Images of TJ Ducklo holding one of their White Ribbons for Lung Cancer Awareness in some highly visible places.
You can support their efforts by sharing this Manchester InkLink Communicast story and boosting visibility on social media:
- The White Ribbon Project @TheWRP4LC
- check out lung cancer social media chat on Twitter #LCSM
- and follow The Reseach Evangelist Dave Bjork @Bjork5
⇒ Catch up on all Keith Spiro’s Comminicast episodes here.