Addressing lung cancer stigma Priority Areas for Policy Change Angela Criswell, MA Senior Manager of Medical Outreach Building a Better Lung Cancer Support Group AOSW 2014

Defining stigma A mark of disgrace associated with a particular circumstance, quality or person Oxford Dictionary A strong feeling in society that being in a particular situation or having a particular illness is something to be ashamed of Longman Dictionary of Contemporary English

“Did you smoke?”

Self Stigma I felt stupid. I asked myself, “Why did you DO that?” [smoke] --Patty, 5 year SCLC survivor Being diagnosed with lung cancer, I was once again associated with smoking and I guess I blamed myself for my disease. Many people ask, “Did you smoke?” when learning I have lung cancer. --Kathleen, 16 year stage III survivor

Family and Friends I blame myself. But that’s not as bad as being blamed by someone in your family. My husband actually blamed me for it. --Patti, 13 year IB survivor My brother-in-law lost his 7 year old to leukemia. After receiving several of my treatment updates, he sent me a terse note which said, "Take me off your email list. It reminds me of Steven's death who died from no fault of his own." --Ellen, 14 year IB survivor

Medical community I’ll tell ya, it's difficult to be empathetic towards someone with a 65 year history of smoking 2 packs per day…a lot of Docs just think well, this guy sure was asking for it wasn't he? As a nurse I have a hard time not letting my judgments effect [sic] my responses toward certain patients... --Sara, posted to blog on Chicago Tribune website

Medical community The doctor…he gave me two years to live…He said, I could probably last two years…they didn’t want to treat me…because they said they didn’t want to chase the cancer, that, if I did the chemo or whatever, I would become sick and I just wouldn’t have much of a life so I should just go home and enjoy what time I had left. --This patient went on to get a second opinion. Nine years later, was healthy and playing golf nearly every day

Societal I had two different people tell me that I deserved to die because I smoked. --Judy, 13 year IB survivor I know a good way to make [people with lung cancer who continue to smoke] stop. Its called a swift kick out of the hospital. If they are too dumb to stop, kick them out, set up a place for them to die for no cost. Waste of money, life and space. --Eric, posted comment on CNN online story I’d rather not have my money spent on researching a cure to a disease that people choose to get. --posted comment, online news story

Solutions? Defeat fatalism/nihilism with early detection and treatment advances to increase survivability. Make lung cancer a public health priority. Advocate for increased lung cancer research funding, greater parity in funding allocation. Empower survivors. Challenge perceptions—not just about smoking. Change the national conversation, re-frame messaging. Set the example.

acriswell@lungcanceralliance.org 202-774-5389 Building a Better Lung Cancer Support Group AOSW 2014