Does lung cancer have a stigma attached to it?
At the recent American Association of Cancer Research (AACR) meeting in Washington DC, a press conference was held to discuss new treatments and options for people with lung cancer. In a break with tradition, the briefing was held not only with some of the top researchers in the area including Drs Ed Kim and Roy Herbst from MD Anderson, but the local Georgetown doctor brought a couple of her patients with her to drive home some important messages:
- Clinical trials are important to provide access to new medicines
- It's a devastating disease
- Not all people with lung cancer smoke
- Not all people with lung cancer are elderly
It struck me at that moment that of all the main cancers (say breast, lung, colon, prostate), lung cancer unfortunately seems to have the most stigma associated with it. Perhaps this is because of the smoking association, but quite frankly, one fifth of people with the disease will be never smokers, often younger with families. This was illustrated by the two gentlemen at the press briefing – one had never smoked and one had smoked a little in his youth, yet both had lung cancer and both were young (they looked under 45 yo).
My Twitter buddy, Dr Jack West at Swedish illustrated this point well with his very sad but poignant blog post about a young (42 yo) woman who died over the weekend. A tragic loss, and no, she had never smoked.
Looking at the American Cancer Society figures, you can get a better picture of how devastating this disease really is:
"About 222,520 new cases of lung cancer will be diagnosed (116,750 among men and 105,770 among women).
There will be an estimated 157,300 deaths from lung cancer (86,220 among men and 71,080 among women), accounting for about 28% of all cancer deaths.
Lung cancer is by far the leading cause of cancer death among both men and women. More people die of lung cancer than of colon, breast, and prostate cancers combined."
From those figures alone, you can see that many people will have maybe, 1-2 years from the time of diagnosis, unless they are lucky to be diagnosed very early and have a chance of cure with surgery and chemoradiation. More people die from lung cancer than the other big solid tumours combined – that's an astonishing statistic in itself.
One of the other things I've noticed is how breast and prostate cancer groups are extremely active in advocacy, lung cancer not so much. There are some great people doing good things though to address this gap, though. Some examples include:
- AACR have been very active in this field and are making great strides with increased efforts to harness the integration between basic research (including biomarkers) and clinical practice through their alliance with the International Association for the Study of Lung Cancer (IASLC) organisation. This will hopefully speed up new developments from bench to bedside.
- If you haven't seen it, Dr West's website, GRACE, provides some truly excellent education resources and information for people with lung cancer – it's well worth checking out.
- On Twitter, WTFlungcancer through the sterling efforts of Jennifer Windrum, are raising awareness of lack of funding for lung cancer initiatives through social media outreach.
- Another great resource on Twitter is LUNGevity, which seeks to help raise funds for lung cancer research, as well as providing support for people.
- Pharma and Biotech companies are also doing their bit with over 1,000 trials posted on the clinical trials database to help with access to new experimental therapies and pipeline agents.
There are many other examples like this, but changing the stigma associated with the disease, and more importantly, developing better methods of early detection, diagnosis and treatment is going to take some time.
What initiatives would you like to see in this area? How can we help change things for the better?
{UPDATE: originally, I intended to link to Fard Johnmar's excellent post on lung cancer pessimism and the stigma associated with it after a Twitter discussion we had about the topic, but got distracted by some urgent client requests that came in. My sincere apologies to Fard for forgetting! The study with their non-profit partners, The Lung Cancer Alliance, is here – it's well written, nicely produced and worth checking out.}
Photo Credit: Andreia
2 Responses to “Does lung cancer have a stigma attached to it?”
Sally:
Fantastic article and data. I thought your readers might be interested in a study we conducted on the subject of stigma and lung cancer. We found that not only are lung cancer patients blamed for their condition, but there is a great deal of pessimism about the disease. Interested readers can learn more about the study here: http://unniched.com/?p=500.
Fard,
My apologies… I forgot to add the links you sent me from out Twitter discussion so have added them as an addendum.
It really was a well written report and well worth highlighting. Certainly, Pharma companies involved in R&D in the lung cancer space could do a lot more on education and other softer initiatives such as social media to help in this direction with clinical trial access and other programs.
Stronger patient advocacy is also key to having a voice for funding and education helping to reduce the stigma.
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