The detrimental effects of stigma
The stigma experienced by patients with lung cancer is undeniable. Stigma and shame are inexplicably linked, and as a result, are part of the lung cancer story. Although the connection between smoking and lung cancer cannot be denied, the stigma persists, in part, because the public continues to view smoking as a bad habit rather than the serious addiction that it is. Whether patients smoked or not, they tend to be blamed for having caused their disease. For many, this blame adds an emotional burden to an already overwhelming situation. It can adversely affect the way they cope and communicate. Those with lung cancer and their loved ones are often hesitant to disclose the disease to others. Many do not reach out for help for fear of being judged and blamed.
As a community we recognize the evolution and relationship that stigma has on both patients and their families, but we are hopeful that ongoing efforts to educate Canadians will close this ugly chapter. The ‘shame game’ is a dangerous thing when a patient is already struggling to remain positive and channel energies into survival. The presence of intense stigma has been linked to a number of negative health outcomes. The majority of patients with lung cancer report experiencing stigma, often related to guilt, regret, perceived blame and other negative beliefs about smoking history. The association of lung cancer with smoking often results in negative reactions and blame from others, assuming those patients ‘brought it upon themselves’.
The stigma surrounding lung cancer is presumptuous because:
• Smoking is not a bad habit. In fact, smoking is one of the most difficult addictions to conquer. For many people, especially those with less social support or few financial resources, conquering such an addiction can be a very difficult undertaking.
• A genetic component may predispose certain individuals to lung cancer or protect them from it.
• Other factors may cause lung cancer including exposure to radon, asbestos and second-hand smoke.
Anti-smoking campaigns focus on the link between tobacco and lung cancer. However, smoking is linked to many other diseases such as heart disease and stroke. The truth is, if you have lungs you can get lung cancer. This includes current smokers, those that have worked hard to quit, and never-smokers. No one deserves lung cancer and yet lung cancer patients face stigma and judgment that they have a self-inflicted illness. Is the tobacco agency not more to blame for making a highly addictive product? Canadians are known for an open attitude and one that does not judge based on sexuality, religion, gender or age. Why are we judging individuals based on their cancer type? If we put the facts in place, the notion that if you don’t smoke, you are worry free from cancer is a common misconception caused from misguided campaigns in the media. This leads to a number of complications such as late diagnosis and poor rates of survival - lung cancer can affect everyone, not just smokers. In fact, as many as 15 percent of lung cancer patients are life-long non-smokers, and an additional 35 percent of patients diagnosed with lung cancer have quit before the time of diagnosis. The rates of never-smokers with lung cancer is also on the rise and a re-focus of media reporting is required to align with a shifting demographic of patients being diagnosed. It is well documented that stigma is associated with negative psychosocial and medical outcomes, including delayed diagnoses, poor quality of life, poor communication between the patient and their physician and increased mortality. Studies that look at stigma and the long-term outcomes of cancer are few and far between, but anecdotally, there is a great deal of real world evidence linking stigma to reduced treatment adherence and psychosocial distress.
As a result of this stigma, patients may experience:
• Complex self-blame and intensified guilt and shame.
• Fear of disclosing one’s diagnosis of lung cancer.
• Avoidance of social situations, leading to increased feelings of isolation.
• Increased stress and difficulty coping.
• Threats to economic opportunities and financial problems.
Research indicates that young people with lung cancer may experience more stigma and greater negative reactions than older people, perhaps due to the belief that older people became addicted when smoking was socially accepted and the dangers were not widely known.
In one of the few studies that have looked at stigma in lung cancer, 45 patients were interviewed. Results showed that the stigma had serious consequences. A common theme was avoidance of social situations in order to prevent being asked about smoking or being blamed, be it real or implied. This increases isolation and limits potential sources of support.
"When I told people I had lung cancer, they tended to react with horror and one of the first things they asked is whether or not I smoked,” says Roz Brodsky, a cancer patient who experienced the stigma first-hand. "It's not fair that lung cancer gets singled out. When someone has a heart attack, no one asks them how much fast food they have eaten.”
Some patients in the study also worried that the stigma would adversely affect access to care, and the quality of care they receive. Others in the study felt that the media contributed to the stigma. Stories tend to portray lung cancer in the worst possible light, thereby increasing the public's fear about the disease.
Lung cancer has not received the kind of media attention it deserves. When it is reported, it is usually because a public figure has died, and the person's smoking history is often mentioned up front. This serves to further stigmatize the disease. Success stories rarely get told.
Most people automatically assume that lung cancer patients smoked, despite the fact that about 15% of lung cancer patients never smoked. For these lifelong non-smokers, the sense of injustice can be particularly strong. Morty Sacks, former President of Lung Cancer Canada, stated "My wife never smoked a day in her life, but she never got the benefit of the doubt. Instead of dealing with the disease, we found ourselves dealing with the issue of smoking. It became very draining."
The same stigma is felt by lung cancer patients who quit smoking before the diagnosis, a group that accounts for about 35% of new cases. They receive the same messages of blame and are not offered the commendation they deserve for having overcome an addiction.
Research data and patients' stories show clearly that stigma is harmful. It can be detrimental to the well being of patients and their loved ones. It discourages compassion. Public education is the key to changing the public's perception and reducing the stigma associated with lung cancer.
Although lung cancer is by far the largest cancer killer, it is also the least funded. Compared to others like breast and prostate, lung cancer receives only a fragment of the investment and this is undoubtedly linked to the heavy stigma around the disease. In fact, a study comparing the burden of certain cancers relative to their funding found that lung cancer was under-funded when compared to the burden it poses on society (on incidence, mortality and person-years of life lost). The study concluded that “disease stigma negatively impacts funding”1. Deprived of investment, the lung cancer community is limited in our ability to change the story, quickly.
Global Perspectives of Lung Cancer
Lung cancer patients are likely to suffer significant stigma due to the disease's link to smoking, according to recent large-scale studies published in 2017. The research, which was carried out by Ipsos MORI on behalf of The Global Lung Cancer Coalition (GLCC), investigated attitudes surrounding the disease, which is the biggest cancer killer worldwide. Researchers found that 17% to 30% of people in the countries surveyed admitted they felt less sympathetic towards lung cancer sufferers because of the known association with smoking cigarettes and other tobacco products.
The research, which surveyed over 25,000 people in 25 countries, also found some evidence that sympathy levels were influenced by rates of smoking in each country. Generally, people in countries with lower rates of smoking had a greater tendency to admit that they felt less sympathetic to people with lung cancer compared with other types of cancer. However, the pattern is not perfect, which suggests that other cultural or traditional factors also have an important role to play.
The GLCC continued its research in 2019 with smaller scale surveys from seven participating countries. These surveys highlighted similar findings where approximately only one in five participants disagreed with the statement “generally, patients with lung cancer have caused their illness through lifestyle choices and behavior.” Interestingly, 87% agreed or strongly supported lung cancer screening programs in their respective countries.
Dr Matthew Peters, chair of The Global Lung Cancer Coalition, which is made up of 26 non-government patient organizations across the globe, said, "This research supports what we have suspected for a long time; that lung cancer carries a noteworthy stigma." Although the majority of those questioned rejected the notion that they felt less sympathetic towards lung cancer sufferers because of its association with smoking, 70% of patients feel that there is a stigma associated with having lung cancer. "You simply do not see this type of blame culture with any other disease. Lung cancer is the biggest cancer killer in the world. There is no place for a culture of blame or shame that adversely affects individuals and contributes at a broader level to poor resourcing of the research necessary to allow people to live longer and better lives after a lung cancer diagnosis. No one deserves lung cancer.”
Perceptions of lung cancer and potential impacts on funding and patient care: a qualitative study (2015)
How LCC plans to combat stigma
Part of Lung Cancer Canada’s activities is aimed at providing the public with accurate facts about the disease. It is also working with the media to report on lung cancer in a balanced way, often through the stories of survivors who are willing to step forward.
Social attitudes, though, are resilient and reducing the stigma of lung cancer will take patience. Lung Cancer Canada looks to other diseases such as AIDS, and the fear and stigma associated with it in the early days, as sources of inspiration and determination.
Armed with evidence about the negative impacts of stigma, Lung Cancer Canada believes a new approach to public health education and awareness is required. Campaigns that educate Canadians about the risks, but counter the ongoing issue of stigma can help the fight against lung cancer ‘turn a page’ where the focus can move from blame to support.
1 Kamath, Suneel D, et al. “Comparison of Cancer Burden and Nonprofit Organization Funding Reveals Disparities in Funding Across Cancer Types.” Journal of the National Comprehensive Cancer Network : JNCCN, U.S. National Library of Medicine, 1 July 2019, www.ncbi.nlm.nih.gov/pubmed/31319386.