E-3. Politicizing lung cancer: Mobilizing decision makers' support

Abstract

Lung cancer is one of the major health scourges of our time; unfortunately, most governments are not tackling this disease as a matter of urgency and as a consequence, they allocate insufficient funding for lung cancer research, treatment and care. Despite its enormous public health impact lung cancer research is funded to a much lesser degree than other common malignancies. In 2000, the US National Cancer Institute (NCI) estimated that it spent only $1,200 per lung cancer death, compared to $11,400 for breast cancer and $8,000 for prostate cancer [l]. Much of the funds the NC1 makes available for lung cancer research ARE spent on tobacco-use prevention studies, which although a priority area in the fight against cancer, overlooks the fact that more than 50% of all lung cancers occur in former smokers. This means that for the foreseeable future, no matter how successful the outcome of tobacco-cessation studies, lung cancer will be diagnosed in a significant number of patients who will be denied potential benefits emanating from research in lung cancer treatment and support. Furthermore, a report from the UK’s National Cancer Research Institute shows that lung cancer received only 3% of cancer research funding made available by the British government and cancer charities, whereas leukemia research got 17% [2]. Lack of knowledge about lung cancer and negative attitudes held by professional caregivers, policy-makers and the general public alike have compounded this unsatisfactory situation. The net result of the low priority accorded lung cancer is that treatment is sub-optimal, there is a paucity of support services and patients are not surviving as long as they could. Despite the fact that lung cancer is the most common cancer worldwide, few lung cancer patients are well enough, or survive long enough, to be able to speak out and fight for their rights and only a small number of lung cancer patient advocacy or support organizations exist. This is probably because, even though there is an increasing incidence of lung cancer in young people and women, it is primarily a disease of older men, many of whom find it impossible to challenge the discrimination and inequities they confront daily, not least because of the demoralizing impact of the stigma associated with their disease. Consequently relatives of lung cancer victims and health professionals often act as “surrogate” lung cancer patient advocates. A small number of general cancer support organizations and cancer charities have made sterling efforts to meet the needs of lung cancer patients; however, most overlook the plight of these patients and instead focus their efforts on anti-tobacco campaigns. Paradoxically, media interest in such campaigns has made it more difficult to for lung cancer patient to have their voice heard. Breast and prostate cancer patient advocates have been in the vanguard of efforts to politicize their cancers and have wielded their power to challenge discrimination and inequities, often to great effect. As a result of an intensive lobbying effort, the U.S. National Breast Cancer Coalition (NBCC) and other organizations secured a six-fold increase in federal funding of breast cancer research since 1992 [3]. Part of the federal funding for breast carcer comes from the Department of Defense’s (DOD) budget and to date, over one billion dollars has been diverted from defense spending to the DOD’S Breast Cancer Research Program. The U.S. National Prostate Cancer Coalition (NPCC) has also succeeded in having money diverted from defense spending to prostate cancer research. In the UK, the cancer charity CancerBACUP has successfully challenged inequities in access to standard cancer treatments. In 1999 the National Institute for Clinical Excellence (NICE) was established to speed up patients’ access to state-ofthe-art treatments and to eliminate the inequities associated with post-code prescribing. Since its establishment NICE has assessed a number of cancer drugs and CancerBACUP has put pressure on the government and health authorities to ensure that NICE’s recommendations are implemented [4]. The charity has also campaigned successfully to have some of NICE’s recommendations overturned. There are many other examples of how decision makers’ support can be mobilized by “patient power” and where patients have reaped significant benefit from the politicization of their disease. We believe similar success can be achieved through the politicization of lung cancer. Lung cancer patient advocates need to employ a variety of tactics to raise public awareness of their plight and to compel policy makers, drug regulators, researchers, clinicians and pharmaceutical companies alike to listen to their opinions and include them in the decision-making process. Governments and NGOs need to develop coherent and equitable policies to address the current deficiencies in lung cancer research, treatment and support and allocate sufficient funding for policy implementation. It is time for lung cancer patients’ voices to be heard in the corridors of power and for some meaningful progress to be made in the fight against this under-treated and lethal disease. Only then will the enormous burden lung cancer places on patients and families be reduced.