The American Lung Association Seeks to End Stigma

When patients are diagnosed with lung cancer, one of the first questions they're often asked is, "Do you have a history of smoking?" 
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.

Talk about this article with other patients, caregivers, and advocates in the Lung cancer CURE discussion group.
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