The Role of Advocacy Groups in Lung Cancer

Summary of Key Points

† Deceased.

To describe the functions of advocacy.
To describe how lung cancer advocacy groups accomplish their goals.
To describe how they can influence lung cancer outcomes.

Advocacy is defined as the act or process of supporting a cause or proposal. Effective advocates in the health-care field influence disease awareness and education, research and drug development, public policy, and legislative and governmental issues. Cancer advocates have become an instrumental and influential force on behalf of cancer care.

Cancer advocacy is rooted in the early work of the breast cancer movement in the United States beginning in the 1970s. The political and social activism of the HIV/AIDS movement during the 1980s and 1990s further influenced US breast cancer advocacy. Foundations and charitable organizations emerged to fund efforts on behalf of breast cancer information, education, emotional support, and research. Media played an essential role, and with an engaged public, policymakers and decision makers were paying attention to the vision and demands of the breast cancer advocacy community, which eventually led the way for advocacy efforts for other disease types. The common goals of cancer advocates include raising awareness and education; ensuring patient access to screening, diagnosis, and treatment; stimulating research and clinical trials; addressing the psychosocial and emotional issues associated with cancer; and empowering individuals to gain control of their disease. Advocates are directly responsible for challenging public perceptions, stigma, and disease identity; they can influence and shape research and policy agendas.

Today, in many parts of the world, cancer advocates work in conjunction with medical experts, political leaders, the pharmaceutical and biotech industries, corporations, and government and legislative representatives. Each country and region of the world presents unique issues for advocates that are based on culture, society, economics, and existing governmental and health policy infrastructures. Global patient advocacy must tailor its tactics and activities to meet and respond to these needs.

Lung Cancer Advocacy Groups

In 2001, a global search revealed the existence of only nine not-for-profit organizations with an interest in lung cancer advocacy. Of these, only two were lung cancer specific; the others were representing generic cancer or respiratory diseases. In coming together, these organizations established the Global Lung Cancer Coalition (GLCC), an allied group of registered not-for-profit, nongovernment organizations dedicated to improving lung cancer outcomes. By 2016, the GLCC had grown to 35 member organizations, from 25 countries, and now provides a centralized referral network to these organizations within its website. Lung Cancer Europe is a relatively new coalition, which provides a European platform for already existing lung cancer patient advocacy groups and supports the establishment of new national groups in European countries, where they do not currently exist. More information is available at http://www.lungcancereurope.eu . There are also additional lung cancer advocacy groups in the United States, and there may well be others across the world advocating in this disease.

Challenges in Lung Cancer Advocacy

Despite the recent formation of several advocacy groups in lung cancer, the number of these groups is still low. Lung cancer advocacy is most developed in North America, Australia, and the European Union, in particular, the United Kingdom. We see small groups emerging elsewhere in the world, even though in Eastern Europe national lung cancer organizations are not common. As with other health-related agendas, sustaining and building advocacy groups is a challenge. Negative issues associated with lung cancer, such as those described in the following section, make it particularly difficult to advocate for change and improvement.

Lack of Advocates

Individuals who advocate for a particular disease tend to be directly affected by the disease, such as patients and caregivers. Sadly, few people with lung cancer are well enough or survive long enough to become advocates. Lung cancer is the number 1 cancer claiming more lives than any other cancer in the world and has a less than 17% 5-year survival rate. An additional issue is that compared with other common cancers, there are relatively few high-profile celebrity supporters of this disease. As such, there are relatively few lung cancer voices championing the cause.

Stigma Surrounding the Association With Tobacco

Lung cancer is often seen as self-inflicted because of its association with tobacco. An Ipsos MORI consumer poll, commissioned by the GLCC in 2011, showed that, although there was national variation across the 15 countries surveyed, on average, 20% of people felt less sympathy for people with lung cancer than for people with other common cancers ( Fig. 61.1 ). The national variation was 10% to 29%.

Fig. 61.1, Results of Global Lung Cancer Coalition/Ipsos MORI consumer poll (2011) to evaluate sympathy for people with lung cancer compared with other types of cancer.

People with lung cancer have reported higher levels of perceived cancer-related stigma compared with people with breast or prostate cancer. The belief that one has caused one’s own cancer has been correlated with higher levels of guilt, shame, anxiety, and depression. The stigma caused by a tobacco-related disease can create hardship for patients, many of whom suffer in silence and isolation and feel a sense of hopelessness and helplessness about their condition. In fact, irrespective of whether people with lung cancer smoked or have never smoked, they feel stigmatized because of the tobacco association.

The stigma and blame associated with lung cancer are also a contributing factor to late presentation. Stigmatization has a negative impact on the disease and on advocacy initiatives. Central to the lung cancer advocacy community is its focus on reducing the stigma associated with this disease because it can profoundly affect not only patients in their personal identity, social life, and economic opportunities, but also their families. Many diseases are lifestyle related, yet the patients are not affected in this way. It is important that messages such as “no one deserves lung cancer” and “smoker, former smoker, or never-smoker—anyone can get lung cancer” are widely disseminated.

Low Public Profile

Because of poor outcomes overall, a lack of advocates, and a relative lack of celebrity supporters, engaging the media in lung cancer has been challenging. Journalists in many countries consider lung cancer to be depressing and so have been reluctant to report on lung cancer issues. In addition, there is a reluctance from those living with lung cancer to speak out, given the stigma and fear of self and community blame.

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