JNCI Cancer Spectrum | 2019
Who Actually Funds Cancer Research?
Abstract
Few would argue that support of cancer research is a noble effort that not only has led to significant advances in prevention and treatment over the last 60 years but also has much more to do to control the disease, especially from the Damocles sword of recurrence. The effort is global and comprises a smorgasbord of support mechanisms from small charities to governments and celebrity telethons. In this issue of the Journal, Schmutz et al. (1) survey this plethora of funding sources using a bottomup approach (involving collection of information from funding source acknowledgments in publications) to assemble the most comprehensive picture yet of the various entities that support cancer research. They arrive at the rather startling number of 4693 organizations that they classify as active funders of cancer research in the past decade. This number represents more than a doubling since 2008, although there are signs of consolidation. Why is this important? The authors note that it is a starting point from which further analysis can be launched. Its intrinsic worth is not only as an A to Z look-up catalog of a bewildering array of funders but also as a comparator of practice across various jurisdictions. Cancer is unique in disease research in having such a large spectrum of support structures, many of which are well established, starting at the turn of the 20th century. This isn’t the case for other major chronic or infectious diseases with similar morbidities and mortalities such as cardiovascular disease and dementia. The diversity of funders is the consequence of several components including the traditional characterization of the disease by site, the emotional impact of diagnosis, and the survivor and friend communities of the patient population. There was also the perception that not enough was being done fast enough to curb the blight. Some of the most successful efforts coincided with empowerment of women and became a lightning rod for feminist rights and equality. But cancer research spending is far from equitable, with significant disparities between funds raised and incidence and prognosis of the various types of disease. This is due in part to new stigmas such as association of disease with personal lifestyle or by poor survival and, hence, dearth of patient advocates. The atrocious prognosis of lung cancer combines these two elements and has only relatively recently been given the attention warranted by its societal burden. The study includes supporters of all types of cancer research, from biomedical to health services and behavioral research but did not include interests that focus only on service delivery, advocacy, and so forth. These activities are often part of the mandate and are supported in concert with research, especially by charities. Almost one-third of the listed funding organizations are research facilities, namely hospitals, institutes, and universities. The authors rightly include these in recognition that the full costs of research are rarely covered by external research grants and so on and that the institutions themselves play an indispensable role not only in hosting the research activities but contributing to financial support. The data reveal some interesting insights. The United States has double the number of cancer research entities than does Europe and almost three times that of Asia. Of course, the gross number doesn’t necessarily reflect the quantity (or quality) of support provided, and this was not assessed in this study. There are some caveats to the methodology (as the authors are careful to explain), including language bias and lack of specificity in identifying the researcher-reported sources of their support. Perhaps surprisingly, more than one-third of publications lacked sufficient information to identify their source of funding —which is increasingly, and understandably, a requirement of funding agencies for purposes of accountability and awareness of the end result of their investment. It is reasonable to ask why are there so many funders of cancer research, even when institutional contributors are removed. One may also ask if this is the most efficient means to support cancer research, given unavoidable duplication of administrative costs and loss of economy of scale. Taking the data at face value, there is evidence of recent reduction in funder numbers, which may suggest saturation, economic instability, and/or consolidation. The actual causes are important to understand. Regarding the consolidation, prior to the period covered in this study, the largest merger in this sector occurred in 2002 when the Imperial Cancer Research Fund, which was then 100 years