National Post (National Edition)
THE WAR ON CANCER
HOW TO GET THE MOST OUT OF EVERY DOLLAR RAISED FOR CANCER RESEARCH.
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 green 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. That’s great news for patients, 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.”
Members of the Canadian Cancer Research Alliance spent almost $500 million on cancer research in 2013, which the CCRA estimates represents 60 to 80 per cent of the total invested in research across the country that year. That figure doesn’t include funding from hospital foundations, private foundations or industry research and development. The people deciding how
to raise and spend that $500 million come from a patchwork of hundreds of organizations, each with its own focus and priorities.
About three-quarters of 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. The remaining quarter comes from charities and nonprofit organizations. Flat federal spending on science is putting the squeeze on cancer research, with the total amount spent in Canada dropping from a peak of $569 million in 2011. That makes it more important than ever for funding agencies to allocate money as efficiently and effectively as possible. Statistics from the charitable sector suggest that’s not the case. In 2013, about $1.5 billion — just over half of the $2.7 billion spent by cancer charities in total — went to fundraising costs, salaries and other overhead. The remaining $1.2 billion, about 45 per cent, went towards fighting cancer in various ways, including supporting patients, awareness and advocacy. 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. Meanwhile, scientists are sounding the alarm over recent changes to the CIHR grant process that have led to a massive backlog in applications. The CIHR funded just 13 per cent of proposals it received for its 2016 competition.
Maria, who is now the treasurer of Lung Cancer Canada, said she’s convinced stigma plays a role in lack of funding for the disease by both charities and the government.
“The numbers have always proved the facts, but who’s listening? Are the politicians listening? Are the drug companies? Is someone who could be a corporate sponsor listening?” she said. “Until that happens, people will die. Our family’s broken.”
Certain cancers like lung and pancreas may be facing a funding crunch, but 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. Many agencies referenced a squeeze on donations since 2008 because of a challenging economy, but the Post actually found an increase in fundraising from 2012 to 2013.
In 2012, 327 cancer charities raised $576 million in tax-receipted donations and fundraising, a 12 per cent increase in funds, and a four per cent increase in the number of agencies. Charities often mis-classify fundraising revenue and expenses on their tax returns, so there’s a good chance they actually raised more.
“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 raised in 2013 is more than the total spent on research by all CCRA members. That’s because the money Canadians donate to cancer charities has 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 for administrative costs and fundraising expenses.
In October, the Canadian Cancer Society and the Canadian Breast Cancer Foundation — two of Canada’s biggest cancer charities — announced their intention to merge. Former Canadian Breast Cancer Foundation chief executive Lynne Hudson was tapped to lead the new organization.
Of the Canadian cancer charities raising money for a specific cancer site, breast cancer pulls in the most donations and fundraising revenue, but is one of the least efficient. About 60 per cent of breast cancer charities’ budgets went towards fighting cancer through research or programs, while about one-quarter — or $19 million — went to salaries.
In an emailed statement sent before the merger with the Canadian Cancer Society, 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 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, with 36 per cent going to non-research related programs, and the remaining 41 per cent covering fundraising and administrative costs. Rosie Hales, a spokeswoman for the Canadian Cancer Society, declined to comment on whether the consolidated charity will allocate funds differently.
Thomson said he thinks Canada could use more cancer charity mergers to maximize efficiency and economies of scale. Ideally, he thinks Canada’s 339 cancer charities should consolidate into 10 or 20, 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 the 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 has the same goals in mind. The same goals are impacting cancer, preventing cancer, treating it better, improving the quality and length of life of people who are affected by cancer,” she said. “Everyone knows it will not be a single project done by a single agency that will get us there.”
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 dec
ade.
“Ten years in the lifespan of the human species is nothing. It’s less than a blink of an eye,” Siemiatycki said.
There’s another problem at play: Universities and hospitals tend to hire researchers in fields with plenty of funding available. In turn, this guarantees that a disproportionate amount of grant proposals will come from over-funded — and over-studied areas.
Disparities also exist among government funding for cancer research. 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.”
Researchers are voicing concerns about the CIHR’s new grant review process, which was supposed to simplify things by standardizing applications and moving discussions online. Instead, it led to chaos. Last July, more than 1,200 scientists signed an open letter protesting the changes. The CIHR agreed to return to face-to-face peer review.
Jim Woodgett, a cancer researcher and director of research at the LunenfeldTanenbaum Research Institute, said the problems with federal funding for cancer research go far beyond the grant review boondoggle. In short, he said there are too many researchers spending too much time competing for a shrinking pool of funding,
administered by too many agencies. “We have way too many funding vehicles,” he said. “Politicians like to create new things. I think one thing we should be doing is consolidating, taking a look at how many agencies we have.”
It’s easy to find problems with Canada’s system for funding cancer research. Finding solutions is another matter.
Elizabeth Eisenhauer, the CCRA co-chair, 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, saying “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 muchneeded 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 crosscountry 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 is remembering something her husband said shortly after his lung cancer diagnosis. They were discussing what it would take to raise awareness about lung cancer’s high mortality rate and low research funding, turning the disease into a rallying cry instead of a shameful secret.
“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.” Next: Living with cancer