1. 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

2. 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

3. “Did you smoke?”

4. 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

5. 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 list. It reminds me of Steven's death who died from no fault of his own."
--Ellen, 14 year IB survivor

6. 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

7. 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

8. 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

9. 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.

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