The Terry Fox Foundation, which has raised more than $1 billion to fund cancer research, recently launched an initiative to provide philanthropic funding to innovative startup firms.

However, there still need to be more funding for all types of research in Canada, including philanthropic funding, says Michael Mazza (photo at right), CEO at the foundation.

“We're batting above our expectations on many levels. But I do think that research in general is still underfunded,” he said in an interview with Research Money.

“I think if you want to make significant changes in complex problems, I would like to see more commitment to research,” including from Canadian governments.

Health Canada in 2018-19 gave the Terry Fox Foundation a $150-million grant, based on matching funds, to establish the Marathon of Hope Cancer Centres Network, with research funding then directed to the Canadian Cancer Society. The Terry Fox Foundation subsequently established the Terry Fox Research Institute to take over the adjudication of research grants, which are all awarded through peer review.

Late last month, Health Canada invested $80 million over four years in the Terry Fox Research Institute – again based on matching funds – to fund Phase 2 of the Marathon of Hope Cancer Centres Network’s work.

Mazza said the purpose of the matching grants “is to help inspire more philanthropy, so people need to donate to get the government monies to flow.”

Phase 1 of The Marathon of Hope Cancer Centres Network – established with the initial $150- million investment by Health Canada – aimed to advance precision medicine in oncology, using shareable data and technology.

“Our objective is to advance the project to where every Canadian diagnosed with cancer will be able to have their tumour sequenced and paired across the coast-to-coast data ‘lake’ that we've now created to determine the best treatment modality for their specific cancer,” Mazza said.

In a federated nation, where health care is mainly a provincial jurisdiction, being able to share cancer data has been “an impossible barrier,” he noted.

However, the Marathon of Hope Cancer Centres Network, instead of centralizing a data hub, established protocols whereby all jurisdictions would collect data in the same way.

“It means we don't move the data, but then we create bridges so that everybody within the network can access the data, regardless of where they are or where they live. And that then applies to clinicians and patients,” Mazza said.

Through the network, he said, participants will be able to biopsy a patient’s tumour, sequence it with whole genomic sequencing and transcriptomic sequencing (which measures all the RNA molecules in a cell or tissue to show which genes are actively turned on or off) plus 200 health data points, compare it across the system, and then provide information back to the patient’s oncology team on the recommended treatment. “Because the biology of the tumour dictates the treatment modality.”

Over the last five years, the Marathon of Hope Cancer Centres Network has grown to almost 60 institutions that are able to access the network’s data. The data lake is comprised of 17,000 cases representing all cancers, with patients of all ages and cultural diversity.

Using precision medicine to target therapies to individual patients

“The biggest gap we’re seeing [in cancer care] is in implementation of science,” Dr. Jim Woodgett (photo at right), president and scientific director at the Terry Fox Research Institute, said in an interview.

“We’ve got to make all these discoveries and translate them and you run clinical trials, and then we're not implementing at the level that we really should be, or at the pace we should be, and it's frustrating.”

Woodgett noted that with precision medicine, there’s a shift underway from running massive, very expensive clinical trials to using biomarkers to identify patients who are going to benefit from specific drugs. This means not as many patients are required to show safety and efficacy – as with large clinical trials.

When it comes to funding research, the success rate for Canadian Institutes of Health Research (CIHR) funding was just over 13 percent in the CIHR’s last competition, he noted. “So they've got a pretty much a set budget. They have huge application pressure. And then 87 percent of the people who apply don't get funded.”

Also, CIHR’s research grants are essentially for one researcher and sometimes a collaborator Woodgett said. But the Terry Fox Research Institute is able to fund interdisciplinary teams of researchers, including new and young researchers.

Teams can receive $3 million over a period of three to five years, and they set their own funding term, depending on what type of research they’re doing. If the team successfully renews their funding, it can amount to $9 million over five to seven years.

Some of these projects have been running for 20 years or more, Woodgett said. For example, the Terry Fox Research Institute funded a research program led by Gang Zheng, senior scientist and associate research director at Princess Margaret Cancer Centre, on a new vehicle – a non-toxic lipid nanoparticle – for delivering drugs to inside of tumour cells.

The team has secured Investigational New Drug approval and successfully used the nanoparticle to do the first injection of drugs into cancer patients.

“So that was going from very, very basic science, understanding the molecules, understanding how they could behave . . .  right the way through to they've got this at least one clinical trial,” Woodgett said.

In Phase 2 of the Marathon of Hope Cancer Centres Network, the focus will be “prospective:” tapping the enormous data lake created in Phase 1 to identify and genetically sequence the tumour mutations in new patients and specific drugs targeting these mutations and types of cancers.

Phase 2 will include building a digital health and discovery platform, to the link private sector into the data lake to help them determine which drugs and therapies they want to pursue, based on having access to the secure and anonymized data.

Based on the existing data, about 65 percent to 75 percent of the genetic sequences identified led to actionable outcomes in patients using specific drugs, Woodgett noted. “In some cases, it was the use of drugs which weren't even oncology drugs. And they got the permission from the ethics board to give those patients those drugs and it [the outcome] was remarkable.”

“We've got all that data. We're analyzing that data and that's telling us what are the optimal therapies to use with all of these examples,” he said.

“But we need to be able to bring this into practice, and to do that we need to ensure that we have the infrastructure in the various hospitals and clinics so they can get return of those results and then act upon them.”

In essence, Phase 2 of the Marathon of Hope Cancer Centres Network is all about the prevention of cancer, through monitoring of people who have a genetic disposition and providing them genetic counselling.

But the main thrust is on getting the genetic sequencing results to the oncologists, so they can use the results to inform their treatment decision-making, Woodgett said. “Then that needs to be converted into standard of care.”

The other major part of Phase 2 is to expand the work to Canada’s North. The aim is to convince provincial and territorial health authorities to use this precision medicine approach in cancer treatment.

“It may not save you money, but you're definitely going to get better outcomes, and it's not necessarily going to lose you money because now you're not wasting money on drugs for patients who are not going to benefit from those drugs, but you're still paying for them and the patient is not improving,” Woodgett said.

With the precision medicine approach that the Phase 1 data enables, patients will be taking a drug “which is more likely to work for them.”

First-of-its-kind partnership in Canada provides philanthropic funding to startups

When it comes to philanthropic funding for research, Mazza said one way to increase the amount available would be for the federal government to raise its “disbursement quotas” for charitable organizations.

The federal disbursement quota sets minimum amounts that charities with property not directly used in charitable activities must spend on their charitable activities each year. The primary objective of the federal disbursement quota is to ensure that charities and foundations – which benefit from generous, taxpayer-funded tax breaks – do not indefinitely accumulate wealth on the sidelines.

For 2023, Ottawa set the dispersal quota requirements at the equivalent of 3.5 percent of the first $1 million in charitable property, and five percent of the amount above $1 million. Data released by Imagine Canada showed that the foundations affected subsequently injected an additional $711 million into the charitable sector.

“I think we should be using the funds we have to solve problems,” Mazza said. “Honestly, I think they can double that [dispersal quota] and we could see more money starting to get pushed into problem solving.

To help ensure that bright cancer research ideas get translated into commercial innovations that will actually help patients, the Terry Fox Foundation started the Cancer Breakthrough Fund. The foundation partnered with Toronto-headquartered Lumiira Ventures, Canada’s largest life sciences venture capital firm, in a first-of-its-kind partnership in Canada.

The Cancer Breakthrough Fund did a first close of funding at $25 million in April and will do a second close, between $50 million and $60 million, Mazza said. The fund has $44 million already committed.

“The purpose of that fund is to is to put more money into startups,” he said.

The Terry Fox Foundation has invested $1 billion in discovery and basic science, generating lots of good ideas, he added. “What we need is entrepreneurs that can take those ideas and scale and commercialize them to benefit patients.”

But Canadian investors are more risk-adverse than those in the U.S. “We don’t put a lot of capital into our startup or our entrepreneurs, and so we definitely want to see that trend changing,” Mazza said.

“We feel that if we can demonstrate through the Cancer Breakthrough Fund that you can actually get a good return and have a big social impact, we think more people will start to think differently about the way they do their investments,” he said.

The Terry Fox Foundation is limited, by federal regulations on charities investing in venture capital, to investing 20 percent in the Cancer Breakthrough Fund as a limited partner. However, the Canadian Cancer Society has now joined the fund, also as a 20-percent limited partner.

The fund will invest 25 percent in early stage-Canadian startups focused on cancer, a stage where investors are risk-adverse because of the higher risk involved.

“For us, we're in the business of risk because we fund basic science, which is all risk,” Mazza said. “So we want to play in that early startup [stage]because we think it'll pull ideas out of labs into commercialization.”

“It’s necessary to have the remarkable research, but the research needs to be turned into therapeutics, and that's the innovation part – the startups,” he said.

A goal of the discovery platform in Phase 2 of the Marathon of Hope Cancer Centres Network is to lead to more informed startups that are likely to be successful, Mazza said, “and that creates a returns-based fund that then encourages investors to start playing in the startups.”

How does Canada’s philanthropic funding compare with Europe and the U.S.?

Charitable giving in Canada has seen a long-term decline in the number of donors, even though total dollar amounts have remained relatively stable or concentrated among fewer high-income and older givers.

The proportion of Canadian tax filers claiming charitable donations has dropped steadily from over 21 percent-to-22 percent a decade ago down to 16.8 percent in 2023 – a 20-year low, according to a report by the Fraser Institute.

According to data from Imagine Canada and Statistics Canada, the overall percentage of Canadians aged 15 and older who made a donation fell from 68 percent in 2018 to 54 percent in 2023 – a loss of millions of individual donors.

Woodgett pointed out that in Europe, philanthropic support for research is much lower than in Canada, because people have come to expect that governments will support research.

In France or Germany, there is corporate philanthropy. For example, Volkswagen or Audi has a foundation that donates a lot of money to research.

The U.S. in some ways has the best of both worlds, he said, because people make huge donations especially to the universities and the hospitals, which also receive funding to cover the operating costs of research – which can amount to 55 cents for every $1 dollar of research funding – as well as the cost of researchers’ salaries.

In contrast, in Canada, the federal Research Support Fund covers only about 21 percent to 22 percent of these research operating costs. And the institutions, universities and hospitals have to pay the salaries of all the researchers.

“They need a base level of philanthropy just to exist because that is not being paid out of the federal or provincial grants. And so, philanthropy is necessary for that,” Woodgett said.

There’s a demographic change happening now with baby boomers in both Canada and the U.S, with more legacy giving in bequeaths and wills, he noted. “And again, it’s much, much bigger in the U.S. than here.”

Woodgett said he’s also seeing a trend of larger donations increasing, while smaller donations are decreasing. “I think the [charitable] sector is struggling. It's in a bit of a – not a pivot point – but it's certainly changing in terms of the complexion of donors.”

Some critics argue that as Canadian governments’ social spending has increased, there has been a corresponding falloff in charitable donations. But Mazza said there would need to be empirical evidence to draw that conclusion.

“Part of it is the gap between rich and poor is increasing. And so that correlates to fewer people giving to charities because they just don't feel that they can do their day-to-day [expenses],” he said.

The Cancer Breakthrough Fund is a long-term initiative aimed at changing the way people think, both about philanthropy and startups, Mazza said.

“I think we as Canadians, we need to think differently about startups. We need to find our entrepreneurs and we need to invest in them. And then once we get the startups viable, there's that whole middle, the scaling companies that need more investment.”

When the Cancer Breakthrough Fund was launched, Peter van der Velden, managing general partner at Lumira Ventures, pointed out that “There isn’t a built-in funding ecosystem for venture here like there is in the United States.”

“That means we need to get more creative about bringing engaged and aligned capital to bear on the sector,” he said. “If we could access even a fraction of the billions and billions of dollars on the balance sheets of health care foundations, it would be transformative to the life sciences sector.”

Mazza said that 21-year-old Terry Fox’s vision and mission, in starting his Marathon of Hope run in 1980, was to get more money invested in cancer research, for all kinds of cancers and anybody who has cancer.

The Terry Fox Foundation, in all its work, draws inspiration from that young man whose “selflessness, the perseverance, the determination and the vision got our attention back then and hasn't let go.”

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