The issue: Cancer research funding comes from hundreds of charities and government agencies — all with competing priorities. The solution: Consolidate the number of charities raising the funds and the number of agencies distributing them to get the best value for each dollar spent.
Christina Amaral was at a Walmart preparing photographs for her father’s memorial when an employee asked her how he died.
Christina, now 23, answered “cancer,” then braced herself for the next question. “Please don’t ask, please don’t ask which one,’” she remembers thinking.
Christina’s father Ed died of lung cancer three years ago, at the age of 53. Before people could ask if he was a smoker — and they always did — she would beat them to the punch and tell them he wasn’t.
“It was always the first question. It was always the first assumption people made,” said Maria, Christina’s mother and Ed’s wife. “It was almost like you have to say, ‘By the way, it wasn’t his fault that he got this disease.’”
Lung is the deadliest cancer, accounting for one-quarter of cancer deaths by killing 20,000 Canadians each year — more than breast, colorectal and prostate cancers combined. But it doesn’t get a run for a cure or a dedicated day when professional athletes wear dedicated colours to raise awareness.
Yet when it comes to Canadian research funding directed at specific types of cancer, the numbers are flipped. Lung cancer receives about six per cent, while breast cancer gets more than a quarter of dollars raised.
And because of higher survival rates, breast cancer has more people to beat the drum for funding.
A National Post analysis of cancer charities in 2013, the most recent year with tax return data available, found 67 registered breast cancer charities. That amounts to one-fifth of all cancer charities in the country, far more than any other type of cancer. Prostate came in a distant second with 17 charities.
Maria said there has been encouraging progress in treatments for lung cancer in recent years, but it makes her wonder what could be done with more funding.
“Imagine if that was doubled or tripled, or anywhere near some of the research dollars that go to the other cancers,” she said. “Yes, there would be survivors.”
Not only did the Post’s analysis of the complex and sometimes opaque world of cancer funding show great disparities in dollars among cancer types, it also revealed the inefficiencies in the sector — and the paltry amounts that actually go to finding a cure.
In 2013, Canada’s hundreds of cancer charities spent $2.7 billion in total, but only 45 per cent went towards fighting cancer in multiple ways, including supporting patients, awareness, advocacy, as well as research. Fifty-five per cent, or about $1.5 billion, went to fundraising costs, salaries and other overhead.
Some charities, such as the Terry Fox Foundation, direct the vast majority of their spending to cancer research. Others spend little, even nothing, on research at all.
Members of the Canadian Cancer Research Alliance, the biggest research agencies in the country, spent almost $500 million on cancer research in 2013, which represents about 60 to 80 per cent of the total invested in research across the country that year. The amount doesn’t include funding from hospital foundations, private foundations or industry research and development.
About three-quarters of that $500 million in cancer research funding comes from government sources, with the federally funded Canadian Institutes of Health Research (CIHR) doling out $141 million, more than any other single agency. Only one-quarter comes from charities and non-profit organizations.
The science community has its own efficiency issues. The people deciding how to raise and spend the research dollars come from a patchwork of hundreds of organizations, each with its own competing priorities. A massive backlog in the CIHR grant process resulted in funding for just 13 per cent of proposals it received for its 2016 competition.
And with flat federal spending on science putting the squeeze on cancer research, it is more important than ever for charities and funding agencies of all stripes to allocate money as efficiently and effectively as possible.
But if certain cancers like lung and pancreas are facing a funding crunch, it’s not because Canadians aren’t opening their wallets.
As of 2013, there were 339 registered cancer charities in Canada, pulling in $644 million in tax-receipted donations and fundraising revenue. (Donations are just one part of total revenue, which can come from many other sources such as government grants, gifts from charities, etc.)
In 2012, 327 cancer charities raised $576 million in tax-receipted donations and fundraising.
“It’s growing, it’s just booming,” said Greg Thomson, director of research at Charity Intelligence Canada. “It’s one of the ones that it’s probably relatively easy to raise money for… everybody knows somebody who has or had cancer.”
The $644 million that Canadians contributed to cancer charities in 2013 exceeds the total actually spent on research that year. That’s because the money goes to cover many things in addition to research.
Many cancer charities run programs to raise awareness or help patients and families. In fact, most of Canada’s smaller, local cancer charities don’t contribute to research at all. Meanwhile, they all have to pay administrative costs and fundraising expenses — the costs of raising money.
Last October, the Canadian Cancer Society and the Canadian Breast Cancer Foundation — two of Canada’s biggest cancer charities — announced their merger. Former Canadian Breast Cancer Foundation chief executive Lynne Hudson was tapped to lead the new organization.
Of the charities raising money for a specific cancer site, breast cancer is one of the most prolific, and pulls in the most donations and fundraising revenue. But it is also one of the least efficient. About 60 per cent of breast cancer charities’ budgets went towards research or programs, while about one-quarter went to salaries.
In an emailed statement sent before the merger, the Canadian Breast Cancer Foundation took issue with the suggestion breast cancer gets a larger slice of funding than it should.
“While breast cancer is the highest funded, it is the most common non-skin related cancer in women and also can behave differently based on the features of the disease,” the Canadian Breast Cancer Foundation said. “It is precisely the research funding that has been allocated thus far that has allowed incredible breakthroughs in the treatment of breast cancer… and has resulted in the improvement in mortality that we see today.”
The Canadian Cancer Society has also come under criticism for spending a shrinking proportion of its budget on research. Cancer researcher Brian Lichty, who went public with his concerns in 2011, said he doesn’t think that’s how most Canadians who donate to cancer charities want their money spent.
“There’s a disconnect between what people think happens to the money and what actually happens to the money,” he said. “You can spend money on patient support forever and nothing will change. But if you invest in research, the requirement for the support goes down because better treatments come along.”
In 2015, the Canadian Cancer Society spent 22 per cent of its $190 million budget on research, and 36 per cent going to non-research related cancer programs. The remaining 41 per cent went to covering fundraising and administrative costs. The Canadian Cancer Society declined to comment on whether the consolidated charity will allocate funds differently.
One solution to Canada’s charities landscape would be to have less of them. Thomson thinks Canada’s 339 cancer charities should consolidate into 10 or 20 in order to maximize efficiencies and economies of scale. But that’s unlikely to happen.
“That’s not the way the charitable sector works, unfortunately,” Thomson said. “There are tons of tiny, tiny, little charities that all have their own mission, their own drive to do what they want to do with the funds they have available. It’s not necessarily about efficiency or effectiveness.”
In the early 2000s, Canada’s biggest cancer research agencies decided to address their own fragmented funding landscape and talk about what could be achieved through collaboration rather than competition. The Canadian Cancer Research Alliance (CCRA) had its first formal meeting in 2005.
Elizabeth Eisenhauer, head of the department of oncology at Queen’s University School of Medicine, and co-chair of the CCRA, said few countries in the world can boast such an alliance. She said the CCRA has had many concrete successes, including a 60 per cent increase in projects done in partnership between agencies from 2008 to 2011.
“Everyone knows it will not be a single project done by a single agency that will get us there,” she said.
The funding data the CCRA has been tracking for more than a decade show some things haven’t changed, however. In addition to the funding disparities that exist among different cancer sites, research into prevention — arguably even more important than a cure — only gets about two per cent of the total.
Jack Siemiatycki, a professor of epidemiology at Université de Montréal and chair of the Guzzo-Cancer Research Society project investigating the causes of cancer, said the problem is even worse than it looks. He said a significant proportion of prevention research funding is going to studies that evaluate things like the effectiveness of anti-smoking campaigns in high schools, rather than identifying new causes of cancer.
One reason for this, he said, is that many agencies prefer to fund research that will produce results in 18 months or less — something they can put in an annual report to show donors or taxpayers their investments are paying off. The type of research that taught us smoking causes cancer, on the other hand, can take more than a decade.
“Ten years in the lifespan of the human species is nothing. It’s less than a blink of an eye,” Siemiatycki said.
The CIHR recently announced a targeted grant program aimed at the deadliest and most underfunded cancers, such as lung, pancreas and liver.
Why did it take so long? “Tough question,” said Stephen Robbins, scientific director of the Canadian Institutes of Health Research’s Institute of Cancer Research. “It could be that you don’t have capacity — maybe you don’t have researchers working in that area who have been trained in and thought about the disease. It could be that the disease has been addressed in a way that just hasn’t made any difference.”
Eisenhauer said Canada could learn from the U.K., where a single charity funds the majority of the country’s research. She stopped short of recommending Canada’s cancer charities consolidate, however. “That’s not really for me to say.”
“An alliance such as CCRA is helpful, but it can’t mandate a change in focus or direction or targeting,” Eisenhauer said.
Researchers expressed hope that Tragically Hip frontman Gord Downie’s brain cancer diagnosis would attract much-needed interest and dollars to cancers with high mortality rates and limited research funds.
Britt Andersen, executive director of the Terry Fox Foundation, said his organization is working on a cross-country initiative to help researchers collaborate and share data. The foundation is currently in talks with major research institutions and governments and hopes to announce an agreement within a year.
“It would change the face of cancer research and cancer care in this country,” Andersen said. “Canada has some of the best researchers in the world. They try to share ideas, but there’s just not a great infrastructure to allow it to happen.”
Maria Amaral, who is now the treasurer of Lung Cancer Canada, remembers something her husband said shortly after his lung cancer diagnosis.
“He said, ‘the only way people will know about this disease is when there are more survivors. You need the survivors to tell the stories,” Maria said. “He can’t do it any more, so I’d like to do it for him.”