Should cancer be politicised? And, should the debate about it be personalised, with a focus on the role of politicians in running the system being held to account for their decisions?
There have been some deeply personal, sad, angry, and highly-politicised statements coming from cancer patients and their families in recent weeks as frustration mounts over cancer care in this country. Much of it makes for uncomfortable listening, particularly for government ministers who are being asked to personally acknowledge and justify the consequences of their decisions.
For the most recent example of a heart-wrenching and hard-hitting challenge to those running the country, see Elizabeth White's must-read Dear Jacinda Ardern, my mother could die because of you.
Here's the key part, in which White challenges the Prime Minister to think about the state's provision of cancer treatment in personal terms: "What if it was you? Or your mother? Your sister? Your best friend? Your aunt? What if it was your daughter, Neve? What then? I can't imagine you settling with the current treatment plan. I doubt you'd demand more trials (despite there already being successful ones) and fail to allocate specific funding to cancer treatment. I don't think you would still be waiting for funding approval two years on from those promises when the life expectancy of ABC is 18 months. If you did you could already be dead! Do you see how ridiculous it is now? And now I'm going to get personal. Do you know how it feels knowing that in a year your mother could be dead because the Government she's lived and worked under since she was a child won't give her the support she needs?"
For those inclined to write off such pleas as lashing-out by someone going through an extremely difficult personal situation, White makes a very strong case for why the issue is political and not just personal: "Let me remind you that during your campaign you promised all New Zealanders world class cancer treatment. In case you've forgotten (because it seems you have), you also promised that ALL New Zealanders get the same standard of cancer care no matter where in the country they live. You said cancer patients would be supported with Labour's $8 billion health investment. You vowed to streamline cancer care in New Zealand by establishing a National Cancer Agency. It's almost two years later and so far all you've done is let us down and another 1200 families like mine have had to bury their mum. How many more have to die before their time?"
White concludes by telling Ardern that "cancer is not political but somehow you've made it just that. You hold the power and the key to peoples' lives. Because of you people will either live or die." She adds that it is "shameful that my father, who is desperate to help his wife, can't even get an email back from the Health Minister."
For another plea to the Prime Minister, from a young daughter whose mother has advanced cancer, see Kirsty Lawrence's article, Teen disappointed by prime minister's prosaic response to cancer funding plea.
Her father is also disappointed by the lack of communication from the Government: "I would have hoped the prime minister would have taken some time to read Molly's letter and respond in person… The prime minister talks about kindness and we are on the eve of the Wellbeing Budget, but the handling of other issues today speaks otherwise."
David Clark, the Minister of Health, was blasted a few days ago at a cancer conference he attended, by the wife of Blair Vining, who was diagnosed with terminal bowel cancer last October. Melissa Vining, had this to say: "Minister of Health, it is great to see you here today. However, you have failed Blair. You have failed me and my children and you have failed many other New Zealanders' by not having a cancer plan".
For more on Blair Vining's story, see Karen Brown's report from the conference: Terminally ill cancer patient works on hatching nationwide plan. Vining explains how his experience of cancer illustrates major problems with the public health system.
Vining, who has bowel, liver, stomach, lung, and lymphatic cancer gave his story of a "dysfunctional" public health system, and why he was forced into the private health system: "I got told I had six to eight weeks to live without treatment, and I got a letter in the mail saying I would be eight to 10 weeks on the waiting list… If I'd gone public, I would have died before I had been seen."
TVNZ's Kate Nicol-Williams also reported on the Vining family's experience, with Melissa Vining saying that "as taxpaying citizens they had complete trust in the public health system before he was diagnosed" but were now speaking out to help fix the system in order to save future lives – see: Government's plan for dealing with cancer criticised at conference.
The problems of a postcode lottery system of cancer treatment
Vining's key criticism is that the DHB system is too fragmented. This leads to all the different hospitals in the country operating separately and differently in terms of cancer treatments. The result is that patients receive different levels of care depending on where they live in New Zealand.
Andrew Little, when he was leader of the Labour Party, spoke out about his own experiences of cancer, and stated "What really worries me is that cancer care can be a 'postcode' lottery".
Little's criticism of the system is now being widely used by those lobbying the Labour-led Government to do more. The Cancer Society's Dr Chris Jackson has focused on inequality of access as a major critique. According to health reporter Karen Brown, "He said instead results for patients varied depending on where they lived, their ethnic group and cultural and socio-economic factors. He also hinted at a lack of ownership of the problem" – see: Terminally ill cancer patient works on hatching nationwide plan.
The politicians simply don't seem to be interested enough in the problems, going on the fact that so few bothered to attend last week's cancer conference. Jackson says: "Unfortunately we invited every member of the health select committee and spokesperson to any part of this meeting, including the opening in our own backyard, and we had responses from two: The minister and one other. That could potentially reflect part of the problem."
Jackson is reported in another article as explaining the problems of a fragmented health system: "We need strong central leadership, and we need change. Individual DHB's do their own thing, and we can't have that in a small country… We need to pool the expertise and the resources. All of New Zealand needs access to the same technology no matter where they are" – see Vita Molyneux and Sam Farrell's Terminally ill man demands reform of New Zealand's cancer plan.
Speaking on TVNZ's Breakfast, Jackson called for the Government to adopt a national plan for cancer treatment, and complained that little progress is being made: "We were on your show this time last year saying that 2500 New Zealanders died of cancer who would have survived if we has Australia's treatment success rates and very little has happened since that time" – see 1News' 'You can't fight cancer without a plan' – specialist demands national strategy to improve health of Kiwis.
According to this news report, Jackson "says we need to look at something similar to countries like Australia and Canada that have a national cancer agency and a national-based approach to coordinating cancer care, prevention and screening".
There have been other criticisms of how the current government is dealing with cancer treatment. For example, Emma Russell reports: "Public reporting of DHBs' performance of cancer treatment wait times was axed by the Labour Government in June last year. Health Minister David Clark said at last year's announcement the targets created 'perverse incentive' but cancer experts say people are dying because of it" – see: Dying father speaks out about failing health system.
According to this, Bowel Cancer NZ spokesperson Mary Bradley complained that the failure of the Government to set targets for the DHBs was "simply not good enough". She pointed out that "A delayed diagnosis can be the difference between having a fighting chance to facing a terminal outcome".
Another criticism being made of the Government comes from the Cancer Society's Chris Jackson. According to Kate Nicol-Williams' report, "Jackson disagreed that cancer treatment was a priority for the Government, saying more investment and action is needed." And Jackson is quoted, elaborating: "In the Minister's letter of expectations to DHB's last year, which is one of the instruments they use, cancer wasn't mentioned so it's clearly not a major priority for this Government and we think that needs to change".
Labour's promises on cancer
The Government is already under fire over its funding decisions and mechanism for cancer medicines – see my column on this from earlier in the week: Are Kiwis dying because the government won't fund. Now, the focus is shifting to the bigger questions about the overall management of cancer treatment.
At last week's "Cancer Care at a Crossroads" conference in Wellington, which was one of the largest international conferences of its type in recent years, David Clark responded to criticisms by promising to do more. Clark said: "We need stronger central leadership, I think it's well acknowledged that the Ministry [of Health] hasn't always achieved that" – see Ruby Macandrew's Health Minister David Clark commits to improving cancer treatment for all Kiwis.
This article reports that "Clark has vowed to get the ball rolling on a national cancer plan", and in terms of the "postcode lottery" problems he said "I am personally concerned about the growing inequalities [to access health care] and that is the main reason I chose to get involved in politics."
It is not clear, however, if the Minister of Health is committing to carrying out his party's pre-election promise to establish a National Cancer Agency. This was a commitment made in election year by then-leader Andrew Little. But answering questions about this last week, the Minister suggested that such promises no longer held because Little had been replaced as leader by Jacinda Ardern.
This week has also seen the publication on the Noted website of an important article on the politics of cancer treatment by Donna Chisholm – see: Why cancer treatment runs the risk of becoming unaffordable. This is an in-depth look at the way the public health system deals with cancer. And, as with other investigations, the article emphasises disparities of treatment and the lack of measurement of how well the system is working: "But to hold anyone or anything to account, it's necessary to measure results and gather data, and that's not happening here as often as it should. When it does, it can reveal concerning regional disparities in practice, because services are run by each district health board (DHB) without a coherent national model."
Donna Chisholm has another article about ethnic inequality in cancer treatment: "Overall, Māori are diagnosed late, referred late, seen late and offered and receive treatment late and receive lower-quality treatment" – see: How we can overcome cancer inequality in New Zealand.
How can this discrimination be fixed? According to one "Māori cancer survivor" and health professional, "the health sector is inherently racist towards Māori patients and is calling for a change in workforce cultural competency to save more lives" – see Moana Makapelu Lee's Health sector 'inherently racist' to Māori says cancer survivor.
Finally, last week's "Cancer Care at a Crossroads" conference featured an important talk from the University of Otago's Professor David Skegg on what has been happening in the politics of cancer treatment, and where things might be going – see the 18-minute video of his speech: #Cancerandme.