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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.

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3 Comments
  • Anthony Miller says:

    Ann Silversides and Terry Sullivan document an important problem, how should research dollars be allocated? In practice, they should be allocated as they always have, to those who come up with the most innovative research proposals, that in the view of those judging them, are most likely to succeed.

    In fact, much research has been performed even into some of the “research underfunded” cancer sites. Two Canadian centres (Montreal and Toronto) collaborated in a multi-country research endeavour coordinated by the International Agency for Research on Cancer in Lyon into the causes of pancreatic cancer in the 1980s, and now there is an International Pancreatic Cancer Consortium supported by the US National Cancer Institute that continues this collaboration, and many of us involved in that original endeavour are still participating.

    Further, as Elizabeth Eisenhower rightly points out, much research can not be attributed to one cancer rather than another. This includeas the large cohort study being established in Canada led by the Canadian Partnership against Cancer, with in Ontario, the Ontario Health Study making a major contribution.

    We need to put more money into determining how we can influence those at risk to take the necessary actions to reduce that risk. It is unfortunate that many of those heavily addicted to cigarettes are unable to give up smoking, and that the overwight and obese avoid physical activity, we need to find out what can be done to help them to reduce their risk. We also must not ignore the possibility that new forms of radiation, radiofrequency fields used for mobile telephones for example, may be creating a time bomb of brain and other cancers that we will not be able to prevent. Again, more research is needed into this potential hazard.

  • Robert Bear says:

    This interesting article notes that research funding is often the lowest for cancers with the lowest survival rates. Further exploration of this might lead to different fund-raising strategies. Is it not understandable that individuals/organizations would want to support research in areas where such research has demonstrated great benefit? There is a public perception that research has been less successful in improving survival in pancreatic and colon cancer. There may be virtue in radically changing the fund-raising messaging related to these cancers. One might start with a public consultation.

  • Duff Sprague says:

    A very interesting article and one that pinpoints a problem reaching far beyond cancer research. This will become an ever bigger issue as the “no increased taxes”, “government is bad” contingent continue to win the day across Canada and the U.S.. As government funded support for health and social services diminishes and charity becomes a more necessary avenue of support for not for profits – we can look forward to popularity contests determining winners and losers. Unfortunately tragedies like child abuse will always finish second to chronic diseases in the charity wars. It is human nature to give to those charities where you most likely have been or will be directly impacted.
    While Governments use of taxation revenue isn’t without concern, I think it is more likely to find its way to the areas of greatest need than are charitable funds. I don’t anticipate this will be a popular perspective.

Authors

Ann Silversides

Contributor

Ann is a journalist and specializes in health policy, writing and editing for a variety of health research institutes, associations and labour unions.

Terrence Sullivan

Contributor

Terrence Sullivan is an editor of Healthy Debate, the former CEO of Cancer Care Ontario and the current Chair of the Board of Public Health Ontario.

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