Cancer research: should investments reflect disease burden?
Vigorous patient advocacy over the past 25 years has pushed funding for breast cancer research in Canada to the top of the charts, outstripping the amounts devoted to research into other cancers.
It’s a remarkable success story for a type of cancer that, just forty years ago, was spoken of only in hushed tones.
But Canadian data that compare cancer burden with research spending also reveal relative underfunding of cancers with higher death rates, such as lung and colorectal cancers, the first and second leading cause of cancer deaths in Canada.
Also relatively underfunded are those cancers, such as pancreatic, stomach and esophageal cancer, which are more likely to be fatal.
In 2004-6, the five-year survival for pancreatic cancer was 6 per cent, and for lung cancer 16 per cent, according to Statistics Canada. In contrast, the comparable rate for women with breast cancer was 88 per cent and, for prostate cancer, the rate was 96 per cent.
How cancer research dollars are distributed
Only two countries track national figures that compare cancer burden and research spending—the United Kingdom, through the National Cancer Research Institute and, since 2005, the Canadian Cancer Research Alliance (see figures 3.3.1 to 3.3.3 in the report Cancer Research in Canada, 2005-2009). The relative funding patterns are similar in both countries.
Cancer is the leading cause of the death in Canada and $545.5-million was spent on cancer research in 2009 (the latest available figures) by the 39 organizations whose spending is tracked in the CCRA report. (The 39 include all major cancer government and voluntary sector cancer research funders that offer open competitions and support researchers in more than one institution.)
Slightly less than half ($265.3) of the total research funding is divided among specific cancers. The single largest amount—$74.5-million—was devoted to breast cancer, with second and third place going to prostate ($32.3 million) and leukemia ($26-million). Lung cancer was funded at $21.2 million and pancreas cancer at $7.1 million.
While funding for breast and prostate cancer and leukemia increased significantly from 2005, research funding for colorectal cancer decreased, slightly, over the same period (to $18.5 million).
Funding patterns raise difficult questions
Internationally, research into relative funding/cancer burden is sparse, perhaps because of the many tricky issues that it raises. Samantha King, a professor at Queen’s University and author of Pink Ribbons, Inc: Breast Cancer and the Politics of Philanthropy, says that funding patterns “are extremely gendered and related to sexuality. Given all the attention to breast cancer and prostate cancer over the past few years, it would be hard to deny that cultural norms play a part.”
Elizabeth Eisenhauer is the chair of the Research Advisory Group for the Canadian Partnership Against Cancer, which supports the CCRA, and the director of the clinical trials group of the National Cancer Institute of Canada.
She stresses that slightly more than half of all cancer research funding in Canada (in 2009, the amount was $280.1 million) is not “site specific” — it is not targeted for a particular type of cancer — and that research in one cancer area is often “applicable across all areas.” Accordingly, there’s some “artificiality” to the labelling of the disease-oriented research, she says.
She says that in her view the issue is not “about fairness, because what is the marker for fairness? The number dying? The number diagnosed? The number who represent survivorship burden?”
Eisenhauer wrote, in an email follow up after the interview: “Is there a ‘right’ balance? Should the investment in research be proportional to burden? Or proportional to unanswered questions?”
Initiatives based on relative gaps in funding
Still, the CCRA’s mapping of cancer burden/funding has prompted agencies to launch new initiatives “based on relative gaps in funding,” says Eisenhauer, who points, as an example, the Ontario Institute for Cancer Research’s investment into Pancure, the institute’s pancreatic cancer research project that is linked to the global cancer genome initiative.
Charity Intelligence, a Toronto-based organization that aims to apply to charities the kind of equity analysis undertaken in the investment world, has relied on CCRA’s relative funding/cancer burden documentation. Director of research Greg Thomson says his charity aims to provide donors with information about where their dollars could be used most effectively.
The organization’s 2011 report, Cancer in Canada, notes that about half of the charities focusing on cancer “cannot be classified by cancer type.” However of the charitable donations that can be classified, “a staggering 47 per cent” is donated towards breast cancer, followed by 27 per cent for children’s cancers, 11 per cent for leukemia and 8 per cent for prostate cancer. The breakdown leaves “less than 7 per cent of cancer-specific charity funding for all other cancer types,” the report notes.
“Everybody knows someone with breast cancer and people will give because they know someone,” says Thomson. “We don’t want to stop that, but we’d like people to pause for a second” and consider, for example, giving half of an intended donation to a relatively underfunded type of cancer.
The voluntary sector accounts for 17.5 per cent of the 2009 cancer research funding tracked by the CCRA, with 75 per cent accounted for by federal and provincial government funded agencies and programs.
“…the most seriously underfunded cancer.”
Some patient advocacy groups also use the CCRA data to help in their fundraising efforts. For example, Pancreatic Cancer Canada notes on its website that pancreatic cancer, which is the fourth leading cause of cancer death in Canada, has been identified as “the most seriously underfunded cancer, receiving less than 1% of research and charitable funding. This gap between lives lost and funding presents an enormous opportunity for donors to save and improve lives.”
The Canadian Cancer Society is planning a special campaign to raise money for relatively underfunded cancers, says Luba Slatkovska, acting senior manager of research for the society’s Ontario division.
The effort would be in addition to their regular funding drive, since money from that funds ongoing research projects in a variety of areas, she says. In a CBC radio interview last week she made a particular pitch for funding for colorectal cancer, but in an interview with healthy debate she stressed that lung cancer accounts for 27 per cent of all cancer deaths —the largest single proportion of deaths— yet receives less than 10 per cent of overall funding.
In addition to funding research into prevention, lung cancer research needs to be focused on early detection, since the majority of cases of lung cancer are only detected in late stages and “the survival rate is dismal,” she says.
Early detection of lung cancer
The Terry Fox Institute contributed $7 million over five years to a study that explores how emerging technologies can improve early detection of lung cancer by screening high-risk individuals. The project, funded until June 2013, is collecting information on the direct and indirect costs of diagnosing and treating lung cancer.
Philip Branton, a McGill University biochemist who was the first scientific director of the Institute of Cancer Research of the Canadian Institutes of Health Research, is one of the few who has written on the subject of Canadian research investment related to cancer burden.
He says there is a “self perpetuating” aspect to the relationship between research funding and cancer type—or indeed any area of research—since researchers are attracted to funding opportunities, and the result is more investigators working in relatively better-funded research areas.
Targetting the most lethal cancers
Branton has argued that “disease burden should clearly be a consideration in the planning of national research strategy.” This approach has gained some traction in the United States where, just last month, the Recalcitrant Cancer Research Act of 2012 was passed and will “create a new federal research initiative within the National Cancer Institute (NCI) that would target the most lethal cancers . . . those with a five year survival rate of less than 50 percent. Immediate attention is to be given to lung and pancreatic cancers.”
It’s hard to believe that large sums of money directed at particularly lethal cancers will not result in improvements in diagnosis, treatment and prevention.