Marketing speaks with Julia Shaefer, head of marketing at Cure Brain Cancer, about the Foundation’s revolutionary approach to trialling – and building support for – cancer treatments.

Brain cancer kills more Australian children than any other disease and more people under 40 than any other cancer. Survival rates are low – only 20% affected will survive longer than five years – and there haven’t been any improvements in that rate for 30 years. Four years ago, Cure Brain Cancer Foundation made it its mission to increase the percentage from 20% to 50% by 2023.

Its approach to this bold mission has been recognised by the Australian Business Awards (it was named 2016 Australian Charity of the Year), by the 2016 Innovation Index released by GiveEasy, Australia Post and Westpac (it came first) and by the AFR’s Innovation Awards, in which it was ranked the 25th most innovative company in Australia in 2016 – the only charity on the list.

Marketing spoke with Julia Shaefer, head of marketing at the organisation, about recent wins, including its involvement in GBM AGILE, the revolutionary data-based trialling system, and the rewarding work of storytelling and how it empowers those affected by the disease.

Marketing: What is the main focus for marketing in carrying out a strategy like this – fundraising?

Julia Shaefer: Yes and no. I’ll explain that. It’s generally accepted that it will cost about $50 billion over 50 years to find a cure for brain cancer. That’s unacceptable, so we needed to look at the system. Cure Brain Cancer Foundation really believes it’s a key player in a global movement. There’s not quite 30 of us in Surry Hills, but we’re swinging massive bats.

Money can buy influence, and where we focus and spend our money is where we’re going to get outcome against missions. We’re not about patient care. We’re not about counselling. We’re about getting people treatment so they can absolutely live longer. And you know what? That’s not going to cost as much as $50 billion. That’s going to cost as much as it takes to bring treatments to our country, for people in our country with brain cancer to access them.

From a marketing perspective, it’s so amazing to be able to translate hope into action. We have some tangible proof points. Since I’ve been here, which has been 18 months, we have funded, or are helping to fund, five clinical trials that are putting real people onto real treatment options right now. We haven’t been able to see that kind of thing in a really long time. Survival rates haven’t changed in 30 years.

One of the key projects that we’re helping to fund is extremely revolutionary. It’s called GBM AGILE. GBM is the most common and most deadly of brain cancers. Most  people die within 18 months when they’re diagnosed with GBM. Survival rates are only about 5%. AGILE stands for Adaptive Global Innovative Learning Environment. It’s a completely revolutionary new way for conducting clinical trials. It’s also a faster and cheaper way to test and develop treatments. It’s been a global effort, which is so fascinating. We had the best of the best out in Australia recently for Australia’s biggest ever brain cancer meeting. We had access to them, and they came and spoke to our foundation.

GBM AGILE is the global effort that has been forged by over 130 experts and they all gave us their time, free of charge. They’re representing the biggest collaboration in the history of brain cancer research, and we’re on the executive team. Little Brain Cancer Australia, we’re on the executive team, and we’re representing patients globally, but most definitely Australians. That didn’t cost us a lot of money, in the whole scheme of things. Our payment to help fund this trial meant that we have three sites that will open within Australia. We’re aiming to get 300 Australians on that trial over the next three years. Australians are going to be among the first in the world to be enrolled in this trial.

M: How do you explain the science to non-scientists?

JS: In ordinary clinical trials you have a handful of people who get a placebo and a handful of people who go on an experimental drug. It’s usually only one drug. You don’t know which you got until the end of the trial, which might be six to 12 months. With GBM AGILE it’s quite different.

In this case researchers have matched the cancer genome and can identify bio-markers. What will happen is something called precision medicine. So, if you and I have the same type of tumour and the same genetic make-up, you go through a trial on a particular drug. If it doesn’t work for you, and I go after you, I won’t get the same drug as you. They’ll give me something else to trial.

All the data gets fed back into an algorithm. This collaboration is global. It’s China, Australia and the United States, with many other countries knocking on the door to be a part of it. Lots of people, in real time, under one master protocol are going through a trial, but not necessarily getting the same drugs. It’s based on your bio-marker and the type of tumour that you have. All of a sudden, your algorithm is going to start spewing out insights like, ‘Will work for this person’, ‘Won’t work for that person’, ‘Give them a combination of this’, or, ‘Give them a combination of that.’

It’s not dissimilar to data analytics in business these days in terms of the amount of sheer data fed into this algorithm. It’s a global trial which will eventually reach thousands of people around the world. The cost of trialling a drug is ordinarily in the billions of dollars and takes a decade or so. The GBM AGILE team have forecast this to come down dramatically, to several years instead of a decade, and it won’t cost anywhere near as much money.

From a marketing perspective, it’s a pretty important and powerful story. The way we market is quite different from what you usually see from a charity. We’ve employed people from outside the charity sector to bring some fresh ideas and an injection of urgency into what we’re trying to achieve. We really have a ‘storytelling model,’ even though ‘storytelling’ is one of those buzzwords that floats about. The objective of our marketing is really to lead to authentic fundraising, not just, ‘Tell a story, feel sorry for us, give us money’. It’s really for people to feel engaged with what we’re doing and allowing them to feel a part of this mission.

We are going to meet this mission, we know we will. We know that in the next few years we’ll see change in the survival rates. Again, to do that, we quite often say that we have the solutions, we just need the funding. To do that we simply need money to infiltrate into the best areas that we know are going to get the best outcomes for people.

M: Who are you marketing to and who are your stakeholders?

JS: There’s a few arms. Our numbers are still being audited so I can’t really give you the figures for the last financial year. We use Salesforce, we have about 70,000 odd names, 20,000 of which are pretty active. ‘Active’ as in they give us money day in day out, week in week out.

When we delve deeper into the insights, into the overlay of our 30,000 strong social network, they are by and large people who are impacted with brain cancer. Either themselves, their family or their networks. If you put it into perspective, and take out the outliers and sponsors like Blackmores and Volvo, the majority of money comes from a really, really engaged community base of about 10-20,000 people. The insight that was gleamed is simply because, as long as brain cancer exists and there’s nothing that anyone can do about it, they want to feel in control. They want to have something that they can do about it.

We have forecast up to 300 community fundraisers for the coming year. That’s people self-organising, and doing things, and we’re the recipient of the money. We spend quite a bit of our efforts marketing to them, but certainly not selling a product. It’s about giving them the narrative they need to raise money for us.

The traditional marketer in me kind of rocks in a corner when I think about our brand not being used, or being misused for that matter, but we aren’t their brand. We’re the recipient of their money. The brand is the person who’s impacted. The brand is, ‘My husband has brain cancer, I’m fundraising for my husband, I’m not fundraising for Cure Brain Cancer.’

That’s one segment in traditional marketing terms. We also have an influencer model, whereby we use partnership marketing, not to be confused with brand awareness, although that’s a very big component of it. We have a lot of organisations or people who own businesses who say, ‘We can’t give you money but what we can give you is access to our database.’ Obviously not handing over their data, but they’ll use their marketing effort to promote us. Which is a really ingenious guerrilla way to access an existing customer base without spending a lot of money.

I can give you some examples. This coming January, and earlier this year in February, we were the charity partner for Chinese New Year in the city of Sydney. Three million people had access to our brand and we didn’t spend a cent in getting awareness. What we did spend some money on, compared to half a million dollars for a TV commercial, was small thousands of dollars to put together some bespoke things for the festival.

Right this weekend, we’re the charity partners for Tulip Time down in Bowral. That’s going to have 48,000 people across our brand. Again, limited spend for us to get awareness. Off the back of both Chinese New Year and Tulip Time, there is money that comes from that, but our objective is not money. Our objective is to get our brand and our story to these people.

Another core segment for us is corporate. The bigger cheques are absolutely going to propel us towards our missions. Money is extremely important. The more money we have, the more influence we’ll have. But we’re not going after the hundreds of millions of dollars. That’s not our game. We’re going after what meets our missions. Once we’ve met our mission, it will change, undoubtedly.

From a sponsorship perspective, we know that being Charity of the Year is quite an honour. We certainly know that we can give back to the corporates now. No longer do we just put our hand out and expect a cheque. We can do quid pro quo to get them in front of our database and give them some value add. All of our executive teams have been through keynote speaking training. We can offer our services from a keynote speakers to our corporates, and show them how we do things different.

There are a few others approaches, from a marketing point of view. We’ve tried mass awareness on a few occasions. Awareness of the disease is a good thing, but we’re on a timeline. We need awareness where it’s going to translate to money. We can’t afford to try and convince everybody in Australia to push their charity spend towards us. What we can do is tap into the nuances of our community and know that they are extremely generous.

We can tap into the philanthropists. High net worth and ultra-high net worth people always want a connection back to where their money is going, not necessarily the cause. They want to see outcome and impact. That’s something we can promise.

Once we’ve met our mission it means surviving this thing. What better outcome do you need? We don’t want the $250 million, $300 million dollars. If we had it, we’d definitely be able to find projects to inject it into, but we’re not forecasting that we need that much.

M: Your use of social media has been highlighted as particularly effective – can you give an example of that?

JS: There’s a few ways we go about it. Social’s a huge one. Obviously, everybody does it, but the way we do things a little bit differently, which warrants the awards we’ve been granted over the last few months, is we don’t just tell people things. We ask for a full two-way conversation. An example of that recently is when our founder Charlie Teo climbed Mount Kilimanjaro with 10 other executives. It was called the Million Dollar Mission. The aim was to raise one million dollars. Everyone who climbed with him bought a ticket for $100,000. We spoke to each of the participants, such as Christine Holgate, CEO of Blackmores, and other CEOs, and a few others including one of the best DJs in the world. An amazing group of people.

Each of them had a connection to brain cancer, strangely enough. The insight was that every single person in this world would have a person they would go to the ends of the world for, so we tapped into that little insight and asked people who they’d climb a mountain for. It was so successful. It brings tears to our eyes when we think about it. Thanks to the collaborative storytelling, our social media footprint grew throughout that campaign by 15%. Engagement lifted by over 1000%. It reached over one million people on our own social channels and five times that through our partners. It was quite interesting, 3.5% increase on our videos. Just from asking a tiny question to the audience and giving people a platform and a voice. Galvanising a community against this global fight is what we need.

M: The charity space in general is pretty a crowded, very competitive one, and part of the problem is they’re all worthy causes. Your approach sounds like it’s a matter of finding a fairly clever but nuanced way of pitching it that makes a big difference. Would that be accurate?

JS: Absolutely accurate. The big thing for us is the mission. Increase survival from 20% to 50% by 2023. It was originally a 10-year countdown. Now it’s a seven-year countdown. Like I said, that gives us such amazing focus. It helps eliminate noise. We say, ‘Leave your ego at the door’, ‘Leave your heirarchy at the door’ and, ‘Leave the red-tape at at the door’. People are dying and it’s unacceptable. Any grievance we might have internally, as you might do at any organisation, we deal with it.

It’s more nuanced, but having a really articulated mission galvanises our entire organisation and we know what we’re striving for. Where it becomes difficult is that it’s not coming quick enough for people. To speed things up, what we need is money. It’s as simple as that. Lots of money. It’s generally considered to be about $50,000 per patient. In the whole scheme of things, it’s relatively cheap compared to some other clinical trials. We’re not asking for patients to pay for that. The patent hasn’t gone through yet, the protocols are still being written. That 150 people having given up their time free of charge for this thing is pretty phenomenal. We’re going to beat this thing. We’re not going to stop until we do.

The fact that we, as a marketing team – we’re not neurosurgeons or neuroscientists – are going to be a part of this, is one of those things you can go home and say, ‘You know what, we’ve done a really great job’.

M: Keeping focused is incredibly powerful for all organisations. Do you have some guiding principles that help that stay on track? 

JS: We do have some guiding principles to underpin our operating plan and all our activity. We have values and behaviours which are very dear to our heart, but I guess the operating principles are something that gives the executive team ability to focus on disruption. Disruption because we have to, not because we’re misfits, if that makes sense.

We have about 12 guiding principles and they include things like ‘dare greatly’, which means we’re going to challenge the status quo. If it’s not working, we’re going to challenge it. We will call it out and we will ask people why and why not.

We also have something called ‘fierce compassion’. Those two words don’t usually fit together, but we certainly have a courageous commitment to putting ourselves into the shoes of people who are impacted by this disease and get angry about it. We care about it so much that we’re cranky! It’s unacceptable and we’re going to do something about it! Just this week we’ve been told about people who have died who are very close. It’s crap to have to have that news and the solutions just aren’t coming quick enough, even though we know they’re coming.

Our gold mission is we have a ‘simply formidable’ team, especially in the marketing and communications space, having re-organised our team. We don’t impede change, we encourage it, we drive it, we deliver it. We’re a ‘doing’ brand. We say what we are going to do, and we do it quickly and effectively, and we base it on insight, not guesswork. That’s so important for us.

When I first started, we were still in our infancy of the transition of going from a couple of people to what we are now. The insight gathering has been such a big part of our remit in marcomms, as has speed to market. We have to make some pretty quick decisions on what we do. Another of those other buzzwords that’s flying about is that we will ‘fail quickly’. If we’re going to fail we’ll do it quickly, we’ll move on. We quite often say, ‘Let’s make 10 decisions, if eight of them are good, we’ll learn from those and that’s great’.

Global influence is a big part of our organisation. We don’t care that we’re in Surry Hills. If Joe Biden, the Vice President of the United States, is coming out to Australia, we’re going to meet him. And we did.

We create markets as well. Our head of research and commercial strategy is heading up a project called ‘The Global Cancer Research Commercialisation Fund’ and simply put, it’s a funding mechanism that will commercialise cancer research. A small investment of our money, or our donor’s money, is going to influence globally. We’re talking to the President about this particular fund. We make sure we have the influence where it counts. We have a financial working group that are garnered from experts around the field. We have a scientific advisory committee. We’re not the ones that have the ultimate say in where in our research money is invested, but we have some of the best experts from around the world guiding us with those decisions.

The one that’s completely first and foremost is, ‘We are here, we are the voice of the brain cancer community’. If there are egos or politics, we say, ‘No, we’re not about that.’