The national crisis cancer center

There is an old saying attributed to Churchill – ‘never waste a good crisis’. Whether the original Winston really said it or not, the concept is appealing – seeing opportunity in crisis is a key leadership trait, and one that NZ needs to keep in mind.

Because New Zealand has a crisis on our hands.

Unfortunately, it’s the type of crisis that is easily brushed off, or forgotten through familiarity. It’s not a short-term shock, it’s a long-term chronic issue, the type easily pushed off the newspaper and TV headlines because of more urgent and appealing news, like a poorly performing All Black team, or the underhand tactics of a team on a reality TV show.

But the crisis in NZ claims more lives than the road toll and will impact more lives than an adverse weather event. The sad and shocking reality is that if you are a male in NZ, you have a nearly 50% chance of contracting cancer before you’re 75. For women, its over a third. Many of us will die from cancer, and virtually all of our families will be touched by it.

NZ leads the world in a number of different cancers (skin, blood, bowel, lung) and the statistics are appalling – but I’ve noticed that people react more to anecdote than to data, so let me quickly recap my own story. Two years ago, aged 46, I was diagnosed with a blood cancer, and spent close to 18 months battling it with firstly chemotherapy, and then an advanced immunotherapy in the USA. Along the way I became an accidental quasi-expert in cancer (with practical experience making up for my theoretical gaps), and now I act as a cancer patient advocate and commentator. This is not an occupation I ever thought I’d have.

Over the past weeks, the concept of a ‘National Cancer Center’ has been kicked around a lot – and I use the phrase kicked, because to me it seems like idea has become a political football. We’ve seen ad-hoc announcements, rushed photo-ops and a disjointed response to this national crisis.

What I hope though, would be to see a truly non-partisan approach. The crisis is of sufficient significance that political leaders should see this as an opportunity to create a unified plan, and not as a topic to use to score political points. Funding a few new drugs, or a new machine or two – while welcome (anything is) – isn’t a coordinated and funded national response to the crisis. Parties should reach across the aisle and agree to have a coordinated approach with sufficient funding and resource to make a significant long-term difference.

Little detail has yet emerged about what such a national center might do, so I thought I’d suggest a few things for consideration.

Firstly - a national cancer center needs to complement, not duplicate, the good work already going on around New Zealand by researchers, physicians, support groups etc, and not simply move the deck chairs around on the Titanic. There’s no point setting up a new shiny building or hiring lots of people to do what others already are. In many ways, the national center needs to coordinate across the existing ecosystem, while looking for opportunities to improve and enhance it.

The center should have significant emphasis on prevention and understanding. Why does NZ have such high cancer numbers? What is it about our environment, habits, diet, genetics etc that sees us as this unlikely leader? This might require research, but it’s more likely this research exists, it’s just not been highlighted, promoted and a reaction developed. A national center can develop a ‘theory of change’, and a coordinated national strategy for understanding and sharing the information we all need.

The center can also coordinate and streamline funding to researchers. As someone who’s personally been involved in fund raising for cancer research, its appalling to me that our clever and dedicated scientists and doctors have to spend so much time chasing funds and looking for philanthropic support for their work. This approach is not only wasteful of their time and talents, but can mean the funds don’t flow in a strategic and systematic way, and is short term. It results in regional variations, fiefdoms and competition, when cooperation and coordination would be much efficient.

The national cancer center should support the many and varied cancer support groups and charities out there, and again coordinate their activities. I hesitate to criticise those that dedicate their efforts to helping others, but it’s clear when you look across the support groups in the health space that there is duplication and overlap, resulting in inefficiency and perhaps waste. A strategic and considered approach could encourage organisations with similar goals to pool their resources and get more efficient in delivering the valuable work.

Of course the center should at its core the idea of the patient, their whanau and the community. Everything needs to be focused on the needs of real kiwis, and everything needs to be accessible and easy to understand for those impacted by the disease. As a patient myself, and an advocate for others, I found it frustrating that the patients are often trying to navigate the system, and understand the complex concepts and phrases, often at a time of great personal stress. The center could take some of the work away from cancer charities and support groups by providing significant patient ready materials, for both the prevention of, and the care for those with cancer, leaving the charities more time and resource for 1:1 engagement.

The center of course should also be involved in making the difficult choices around drug availability and treatment options. It’s shocking to me that we see individuals have to advocate for treatment that are proven to save lives. Sick and dying people should not be spending their efforts gathering signatures or scraping together funds to buy medicines from slight shady international websites.

The center could become a global partner, working to understand and learn from international research and ideas and then apply them to NZ. We don’t have to cure cancer in NZ – plenty of people globally are working on that challenge – what we have to do is work out how to bring those cures to NZ, and quickly, and how to apply global knowledge to our local context.

Other countries have models for how a national cancer center can work – the US established its ‘National Cancer Institute’ in 1937, so we can learn from their experience and work. We should also learn from others who see these centers as national priorities, and not political footballs.

True leadership requires people to sit down and work together when the circumstances are grave, and the job is hard. The crisis New Zealand is facing with cancer care requires that same response.

-          David Downs is a former cancer battler who documented his own personal battle with terminal Lymphoma in his book ‘A Mild Touch of the Cancer’, and now works raising funds for cancer research, and helping other patients with their own battles.