SINGAPORE, Nov 3 – Stigma surrounding lung cancer remains a tough challenge despite significant strides made in treatment and research, advocates said.
Jill Feldman, an American lung cancer patient and advocate, said that unlike other cancer types, lung cancer often carries a blame culture, with patients frequently subjected to inquiries about their smoking history as if it were the sole determinant of their diagnosis.
“I think what’s really important here is there’s been so much progress in advancements, research, and treatment of lung cancer, but the stigma surrounding lung cancer remains a deadly problem,” Feldman said at a press briefing last September 10 at the International Association for the Study of Lung Cancer (IASLC) World Conference on Lung Cancer in Singapore.
“There is an undeniable blame culture in lung cancer that you just don’t see with other cancers.
“Every other cancer elicits empathy and response such as, ‘I am so sorry. What can I do to help?’ But for most of us living with lung cancer, the first question that we are asked is, ‘Did you smoke?’ Now, those three words which seemingly are innocent, may appear to be harmless, actually have significant implications and consequences,” Feldman said.
Feldman, who has lost five family members to lung cancer and is herself a cancer survivor living with EGFR-positive disease, said the first time she experienced stigma was 40 years ago when her father was diagnosed with lung cancer and died at age 41.
“I was at a baseball game and a friend of mine kind of turned to me and said, ‘You’re never in a good mood any more’ and I said, ‘Well, my dad just died.’ And she said, ‘Well, my mom said it was your dad’s fault because he was a smoker’.
“Needless to say that the emotional scars and impact that I experienced at 13 years old stayed with me today,” Feldman said. “And I continued to experience that stigma when my mom and my aunt died when I was in my 20s. And since my own diagnosis, I continue to experience that stigma.”
“I have learned how to handle it but to really watch my kids go through what I went through is heart-wrenching. So, ‘Words Matter’ is not just another catchphrase. It’s simple, yet profound, when talking about lung cancer,” Feldman added.
In 2021, the IASLC Language Guide was published as a collaborative effort involving the IASLC, patient advocates, the National Lung Cancer Roundtable Stigma Task Group, and professionals from various disciplines. Its aim was to combat stigma and uphold patient respect and dignity.
Feldman said the guide is not an exhaustive set of rules but rather a tool to raise awareness and promote inclusion in discussions about lung cancer.
The guide was approved unanimously by the IASLC Board in May 2021. A recent study analysed presentations from the IASLC World Conference 2022 to assess the adoption of non-stigmatising language within the first year.
“The study focused on the term ‘smoker’ because it was the first word in a list of stigmatising language in the guide. So, we searched for its usage in the slide presentations and we also explored presenter backgrounds and when looking at the results, we used two different types of analysis yielding consistent data.
“The highlight was that 177 of 519 slides discussed smoking status and of those 177 slides, 43 per cent used non-stigmatising language. We found that non-stigmatising language was embraced more by PhDs and people in the ‘Other’ category, which included PhD students,” Feldman said.
Feldman highlighted that the guide has since made significant inroads within the community and has gained traction outside the lung cancer community.
Notably, the Tobacco Control Journal changed its policy to emphasise non-stigmatising language, while the United States’ National Comprehensive Cancer Network (NCCN) cited the IASLC Language Guide.
Feldman said the NCCN’s endorsement is pivotal as it influences clinicians and insurance companies in determining patient care pathways. “In other words, it is and it should be, a game changer.”
While acknowledging challenges and the need for continuous improvement, the team is actively working on a second iteration of the guide to address known issues. Feldman said discussions have also begun on a dissemination plan and metrics to measure its impact on a larger scale.
“I love this quote, ‘Do the best you can until you know better. Then when you know better, do better.’ And that’s what we are trying to do here is to educate people to know and do better.
“The pain of watching someone you love suffer through the cruelty of lung cancer until their last breath is unbearable. So, does it really matter whether or not they smoked? Does it mean that they deserve less empathy or that they deserve to die?
“Does it minimise the loss? Or do those left behind deserve less empathy? No, it doesn’t matter. What matters are people. Using words that help, not hurt, matters. Empathic, guilt-free care, and acceptance in the community matters,” Feldman said.
“Only then, can we educate others, kill the stigma, and save lives.”
