A few weeks after joining Genentech in 2011, I had the opportunity to meet with several lung cancer patient advocacy groups. I asked them what kept them up at night and I was shocked by their answer.
“About half of all people with lung cancer never get treated,” one of them said.
How can that be?
As I started to dig deeper into this question, I came across a few studies that referenced low treatment rates in lung cancer and hypothesized that stigma, shame and hopelessness may be factors. Lung cancer was seen as a smoker’s disease and it appeared there was an underlying blame that if you had lung cancer, you did it to yourself.
Is that true? Do we as a society really believe that? And even if we do, does that mean people with lung cancer don’t deserve our compassion and care?
Time for Answers and Action
In mid-2012, my colleagues and I brought together nearly 20 advocacy and industry organizations to form The Lung Cancer Project, a movement to identify, understand and remove stigma and other barriers faced by people with lung cancer – so everyone receives the care they deserve.
The first order of business was research. In order to change the way people think about lung cancer, we needed data. (We’re Genentech, that’s what we do.)
We conducted the first study to validate a hypothesis posed in several peer-reviewed studies that the majority of people associate lung cancer with stigma, shame, and hopelessness. To do this, we partnered with Project Implicit®, a network of scientists from Harvard University, the University of Virginia and the University of Washington who study subconscious attitudes.
When I saw the data, it broke my heart.
Most people in the study believed that a person was at least partially to blame for their lung cancer. Even more alarming, these beliefs were consistent across the general public, people with lung cancer, their caregivers and even healthcare providers.
I wasn’t sure what upset me more: people being denied hope or dealing with shame while fighting for their life. It reminded me of how people reacted to AIDS patients in the ‘80s.
With the evidence in our hands, it was time to start a dialogue about lung cancer stigma and raise awareness of the broader impact on people with the disease.
We first presented the data at the 2013 American Society of Clinical Oncology Annual Meeting, which is attended by 30,000 healthcare professionals. It was a very somber moment to hear the discussant reflect on the “sad” results (these results were recently published in the scientific journal PLOS ONE in December 2015).
Together, with patient advocates and the authors of the study, we leveraged those data to start a national dialogue about lung cancer stigma and bias. Through traditional and social media, we engaged millions of people, including patients, caregivers and healthcare providers, to address bias and change the way we think about lung cancer. Heather Millar, who writes for WebMD noted that even though she was she was knowledgeable enough to be unbiased “The online test I took suggests that, unconsciously, my ideas are different (Read her entire article here).”
We have expanded beyond stigma and have completed a total of six studies that found:
A negative stigma exists towards people with lung cancer.
Many demographic factors impact treatment rates.
One in four people with metastatic lung cancer never see an oncologist and one in 10 never get anti-cancer therapy.
One-year survival for people with advanced lung cancer has more than doubled from 1990 to 2015. That means even a 10% increase in people getting treated could add more than 35,000 years of life across the entire population.
Society’s view of AIDS has come a long way in 30 years, people now know more about the disease, treatments have radically improved and stigma has been drastically reduced. Attitudes about lung cancer need to go through a similar evolution.
Now is the time for social change in how we view lung cancer, and we need your help:
Together we can help everyone get the care they deserve. We have a vision for change. And now is the time to make that change happen. `QED Mark`