Cancer and Maori - saving our people
The New Zealand Maori Council – Te Kaunihera Maori
Maori Affairs Select Committee - health inequities for Māori Inquiry
Matthew Tukaki, Executive Director
This submission deals specifically with cancer and the health inequities for Maori when it comes to cancer support, care, access to life saving and extending medications.
We all know the data and by now you would have also heard a range of stories from across the Te Ao Maori world in respect of cancer, a range of diseases and the system that does more to preclude Maori than include it. The truth is that when any of us are impacted directly or indirectly by a disease such as cancer it comes as a shock. We spend much of our time trying to deal with the diagnosis and the path ahead than we do around prevention and the need to have a system that allows all of us to have an equal shot at life. When I called on this Inquiry on behalf of the New Zealand Maori Council I did so very much not just as a result of the many hundreds of stories from across the Te Ao Maori world but also my own deep personal experience of cancer and its impacts.
But you all know those same stories and I am sure you all share that pain. Each of us could reflect on those stories and they can overwhelm what needs to be done. The fact is that Maori are more disadvantaged than non-Maori when it comes to all forms of Cancer including the fact that we are more likely to die of the disease than non-Maori. Some of that has to do with the fact we are less likely to be focused on prevention, regular health checks and so on.
The anecdotal stories of those who only find out towards the tail end of a severe diagnosis often results in a terminal path. Then there are those of our people in the Te Ao Maori world who are unable to afford unscheduled life saving or life extending medications. The reality is that the economic circumstances of our people mean we are more likely to be at the bottom to the mid-range of low wage rate and low wage growth side of the economy, we are less likely to own our own homes and more likely to carry debt. As our people head towards retirement the financial capacity and capability of our people is lessened even more. Often our old people enter retirement with little savings and assets reliant solely on national super. Their path to affordable, lifesaving and life extending medications is also fraught. Across age groups and rohe, hapu and Iwi our people die unnecessarily. We are often scared to step into the health system when we feel something might be wrong and when we do it can be too late.
Ideally the best way to deal with the problem at hand is to establish a standalone Maori Health Funding Authority whereby cancer, in all its forms, can be addressed for our people and by our people. It is also recognition of the fact that we also must do more to life our people from the bottom of the low skills and wage growth side of the economy because, in many cases, wellbeing in primary and secondary health can only be achieved if we have equitable access through our own financial means.
Knowing what we know the New Zealand Maori Council recommends the following:
A new a series of health promotion campaigns addressing prevention, intervention and postvention. In doing so it is important that there be a stand-alone Maori Health Promotion Office; importantly though it should operate independently of the Ministry of Health, be governed and administered by Maori Health Organisations. Targeted approaches to health promotion around breast cancer is well in train; but more must be done around prevention for other cancers such as bowel, lung and prostate – disease of our Maori men. Campaigns run around trust must also be waged – the truth is many of our people do not trust the current health system and many providers. We must both better understand why our people do not seek help in the early stages of cancer and other disease while at the same time promoting messages around getting checked and so on. Reminders that arrive in mailboxes or in emails once you hit a certain age about a specific disease must be dovetailed by a follow-up; and that follow up must be person to person.
The development of a Maori cancer action and response workforce is a must. The numbers tell us that Maori working in the field of cancer research, cancer care, cancer support and so on are few and far between. We must develop a national workforce strategy to build our own capacity and capability in the field to better support our whanau. This workforce should be made up of allied health workers (those with a specific technical qualification such as oncology or nurse specialist in cancer) and non-allied – the people that provide basic care and support. We should set a target of a 20% minimum increase in that workforce but in doing so we must also turn our attention to pay parity between those who work within the DHB system and those who work in Iwi and Hapu Hauora and social service organisations – we will only recruit, attract and retain if we ensure they are paid equally.
Infrastructure development in our regions to provide a higher standard of quality care and support is a must. Here I do not talk about the needs of DHBS, they are well known. Here I talk about our own Iwi and Hapu Hauora services who rely on little but transient support. This includes new and greater investment when it comes to equipment, space, machinery and back end medical systems. Working with organisations such as the National Hauora Coalition there is no reason why the financial barriers around such back-end systems cannot be bought down.
National Early Access Schemes are up and running in a range of countries including the United Kingdom through the National Health Service. I will labor the point that Maori are not the only ones unable to access life saving and life extending medications – a portion of the total New Zealand population cannot. We must not let all these people fall behind in our care and support. All New Zealanders should consider it a human right that they have access to life saving and life extending medications. An early access scheme can be developed that considers a range of different things from affordability to the scheduling process to trials and testing. It is here that the New Zealand Maori Council also urges that a National Early Access Scheme also include a dedicated National Cancer Research Fund that is a combination of both Government and private funded work. This should also be used as a chance to develop our own researchers and research base. The New Zealand Maori Council is forming a consortium of interested parties to look at how such as access and research program could be built within a Te Ao Maori world view and would be happy to join with the Government to progress the case.
Pharmac does need to be overhauled to a point there is adequate funding to carry out the important role they have. But they must also ensure that they better understand the needs of Maori and those in our country who are not wealthy, who struggle every day to afford the very medications that will allow them to live for longer or just that little bit longer. A review of the tikanga Maori approach is one thing but also a review of the modelling that determine the priority of drug scheduling. Overall, I expect that PHARMAC embed a charter of the fundamental right of all New Zealanders to have access to life saving and extending medications and that Government support it.
Of course, the New Zealand Maori Council supports the many other submissions to this Inquiry such as those from organisations like the Lung Foundation and the many of our whanau with a lived experience. Our single largest goal, across each of the submissions, is to work on a scenario where many more of our people are living long and healthy lives. We can never measure this in financial terms alone. Whether it is one more day, one more week, one more month or year and decades – our prime concern must always be for our people, our whanau and the precious time each of us have with our family.
Finally, as someone were very much a lived experience of cancer my plea is we do not delay in working towards a plan where our people, my people can live long and healthy lives without the worry about affordability or access to treatment and care.
Matthew Tukaki
Executive Director of the New Zealand Maori Council