The American Lung Association Seeks to End Stigma

The American Lung Association (ALA) in recent years has identified stigma as a significant factor contributing to the poor outcomes of patients with lung cancer.

Alongside ongoing efforts at prevention and medical treatment of lung cancer, the ALA has made it a priority to address lung cancer stigma and its effects on patients.

Carly Ornstein, the ALA’s national director of lung cancer education, said that research shows that “the stigma has a negative effect on every facet of life with lung cancer.”

These include delays in seeking treatment out of fear of judgment, reluctance in disclosing a diagnosis, weakening relationships with loved ones and lower quality of care.

The ALA contends that stigma is part of the reason research funding for lung cancer is low, relative to other cancers.

According to the National Institutes of Health, lung cancer received about $250 million in recent years in research funding annually, and it claimed 25 percent of all cancer deaths. That means that about $1,700 is spent for every person who dies each year from lung cancer. That spending rate is much higher for other forms of cancer.

Leukemia receives about $240 million a year and accounts for about 4 percent of cancer deaths. That means almost $10,000 is spent for every person who dies of leukemia. For breast cancer, that number is about $13,000.

The NIH states that funding is provided to research based on its scientific merits, not the type of cancer it targets. At the same time, the presence of a distinct stigma connected to lung cancer may contribute to an atmosphere in which lung cancer gets less attention than its seriousness merits.

Stigmatized groups, according to the ALA, are those that “are judged negatively or experience discrimination because of some personal characteristic or behavior.” For patients with lung cancer, the effect of the stigma is most often a sense that they deserve their cancer.

In addition, the survival rate contributes to the perception that lung cancer is a “death sentence”. The five-year survival rate for lung cancer is about 18 percent.

The blame associated with lung cancer is often a result of the proven link between smoking history and lung cancer diagnosis. More than 50 years ago, lung cancer became the first health effect connected with smoking.

To mobilize the public against smoking, Ornstein said, “older anti-smoking campaigns portrayed smokers as evil, bad and ugly.”

The ALA in no way denies the essential place of anti-tobacco initiatives in lung cancer prevention programs. Yet, one effect of the way some campaigns in the past were carried out has been an unhelpful stigma which further harms an already vulnerable population. To counteract the stigma, the ALA opted against carrying out a “stop the stigma” campaign in the media. This is because some experts warn that similar efforts have been found counterproductive in the past.

Instead of working against stigma, Ornstein explained, such campaigns can bring more negative attention to stigmatized groups, cementing the stigma in the public’s mind. The ALA began its efforts against stigma by first educating its own staff on the effects of stigma, giving them a new lens through which to approach the experiences of patients with lung cancer.

Only a few years ago, such training was not in use. Even advocates for lung health may have been guilty of unknowingly contributing to the stigma when interacting with patients. Until recently, they lacked consciousness of the seriousness of the stigma.

In addition to educating their own staff, the ALA has resources on its website to help advocates frame discussion about lung cancer in non-blaming ways. These resources are intended especially for advocates working with the ALA’s advocacy initiative LUNG FORCE.

“Did you smoke?” is the most common question that patients with lung cancer report being asked after revealing a diagnosis. Whatever its motive, this question frequently comes across as shaming.

Often patients feel the intention behind the question is a sort of accusation, to determine whether they are worthy of empathy or support, based on whether they have a smoking history or not.

“The question may make lung cancer patients feel unsupported by loved ones, on top of the self-blame they are often feeling already,” Ornstein explained. A large part of fighting the stigma is to adopt a new way of speaking about lung cancer, one which rids it of words like “deserve” and “cause,” which imply blame.

The ALA suggests advocates and patients try to discuss lung cancer without repeatedly bringing up smoking. When patients or advocates are asked about smoking, they are advised to mention that, in addition to personal smoking history, exposure to radon gas, second hand smoke, and asbestos are risk factors.

About 20 percent of patients have no smoking history, so it is helpful to challenge the common assumption that all lung cancer is brought about by smoking.

Focusing on positive developments in research to counteract hopelessness is also effective. The message that one’s cancer is impossible to treat has the negative consequence of reduced community engagement and attention to one’s disease. While the five-year survival rate is lower than we would like, more and more drugs are approved every year, Ornstein noted.