David Downs: Cancer crisis needs to be the centre of attention

Popular TV personality John 'Cocksy' Cocks while being treated for kidney cancer in June, 2017. He died in February this year. File photo / Mike Scott

Opinion

COMMENT

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 New Zealand needs to keep in mind.

New Zealand has a crisis on its hands. Unfortunately, it's the type of crisis which is easily brushed off, or forgotten through familiarity. The crisis claims more lives than the road toll and will impact more lives than an adverse weather event.

If you are a male in New Zealand, you have a nearly 50 per cent 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.

We don't have to cure cancer – plenty of people globally are working on that – we have to work out how to bring those cures to New Zealand, and quickly, and to apply global knowledge to our context.

David Downs

New Zealand leads the world in a number of 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 recap my own story.

Two years ago, aged 46, I was diagnosed with a blood cancer, and spent close to 18 months battling it - firstly with chemotherapy, and then an advanced immunotherapy in the United States. Along the way, I became an accidental quasi-expert (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 Centre" has been kicked around a lot – and I use the phrase "kicked" because to me it seems it has become a political football. We've seen ad-hoc announcements, rushed photo-ops and a disjointed response to this national crisis.

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

A national cancer centre needs to complement, not duplicate, the good work already going on around New Zealand by researchers, physicians, support groups etc.

In many ways, the national centre needs to coordinate across the exiting ecosystem, while looking for opportunities to improve and enhance it.

The centre should have an emphasis on prevention and understanding. What is it about our environment, habits, diet, genetics etc that sees us as this unlikely leader? It's likely this research exists, it's just not been highlighted, promoted and a reaction developed.

A national centre can develop a "theory of change", and a coordinated national strategy for understanding and sharing the information we all need. The centre can also coordinate and streamline funding to researchers. As someone who's been involved in fundraising for cancer research, its appalling that our clever and dedicated scientists and doctors have to chase funds and philanthropic support.

The national cancer centre should support the many and varied cancer support groups and charities, and again coordinate their activities. I hesitate to criticise those dedicating their efforts to helping others, but it's clear there is duplication and overlap. A strategic approach could encourage organisations with similar goals to pool resources and be more efficient.

Everything needs to be focused on the needs of real Kiwis, and everything needs to be accessible and easy to understand. As a patient and an advocate for others, I found patients struggling to navigate the system, and understand the complex concepts and phrases, often at a time of great personal stress.

The centre could take some of the load away from charities and support groups by providing significant patient-ready materials, for both prevention and care, leaving charities more time and resource for one-on-one engagement.

The centre should also be involved in the difficult choices around drug availability and treatments. It's shocking that individuals have to advocate for treatment proven to save lives. Sick and dying people should not be gathering signatures or scraping together funds to buy medicines from international websites.

The centre could become a global partner, working to understand and learn from international research and ideas and then apply them here. We don't have to cure cancer – plenty of people globally are working on that – we have to work out how to bring those cures to New Zealand, and quickly, and to apply global knowledge to our context.

David Downs. File photo / Paul Taylor

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

True leadership requires people to work together when the circumstances are grave, and the job is hard. The crisis in New Zealand requires that same response.

• David Downs is a former cancer battler who documented his battle with terminal lymphoma in his book "A Mild Touch of the Cancer", and now fundraises for research and helps others with their battles