Modern medicine has led to an explosion in the number of treatments available, especially when it comes to cancer drugs.

This has led to growing calls from patients and drug companies to publicly fund these medicines, coupled with intense scrutiny of Pharmac’s model, processes and fixed budget.

A series of high-profile cases of patients and families, along with a raft of petitions to the Health Select Committee have focused the debate in recent months.

Patients, advocates and the opposition are calling for greater funding of Pharmac, with money ring-fenced for cancer drugs, as well as the establishment of an independent cancer agency.

Meanwhile, the Government has finalised its Interim Cancer Plan, the strategy that will look at how cancer is detected and treated at all stages. Health Minister David Clarke said the plan would feature “strong central leadership”. The Government and Pharmac had also been looking at options for early access to medicines.

Clark will announce the full plan before the end of the month.

The Pharmac model

This year, Pharmac – the Crown entity tasked with funding medicines and devices – has a budget just shy of $1 billion.

That might sound like a lot of money, but it is a tiny portion of the overall 2019/20 health budget of $19.9b.

Pharmac received $10 million more in the last budget – an increase of a little over 1 percent. And in last year’s budget it saw a bump of a little more than 13 percent (from $870m to $985m). Within that pot of money, $203.8m (17 percent) was spent on cancer medicines in 2018.

That’s less per capita than other countries with comparable wealth.

Pharmac says New Zealand’s funding model, size and focus on generic (off-patent) drugs, gives it a negotiating advantage. The public buyer can get discounts of up to 95 percent on generic medicines, and on average pays about half the listed price of medicines still under patent.

“We’re not going to fund stuff for the sake of funding it. We want to make good, robust decisions. That doesn’t necessarily mean saying yes to everything.”

New Zealand also funds fewer medicines than other countries. A recent study commissioned by pharmaceutical lobby group Medicines NZ, found New Zealand was last in the OECD in terms of access to medicines.

Again, Pharmac says the number of medicines is not a good measure of outcomes.

A major 2018 international CONCORD-3 study, published in medical journal The Lancet, found New Zealand was in the top five countries in the world last year for survival rates from common cancers – unlike the UK, despite its Cancer Drugs Fund.

However, a report last year from the Breast Cancer Foundation, found the average survival rate for someone whose cancer had spread beyond the breast and lymph nodes is just 16 months, compared with two or three years or more in Australia, Germany and France. For Māori, the five-year survival rate was just 5 percent, compared with 15 percent for non-Māori.

Different comparisons and different models, along with gaps in data, make the debate about the best model difficult.

Part of Pharmac’s process includes the maintenance of a secret list of funding applications under active consideration. Those items are ranked in order of priority, and the list is constantly changing. At any one time there are 100 medicines on the list. In total, there are 600 treatments under Pharmac consideration.

There is currently public scrutiny of the analysis of efficacy and the cost-benefit analysis tests Pharmac applies when ranking the treatments, as well as the secrecy of the list, and the time it takes to make a decision.

“We’re not going to fund stuff for the sake of funding it. We want to make good, robust decisions. That doesn’t necessarily mean saying yes to everything,” Pharmac chief executive Sarah Fitt told Newsroom.

“There’s a point we want to get to, and there’s a point where we say, ‘This just isn’t good use of taxpayers’ money’, and we take that really seriously.”

What patients want

While Fitt says the amount spent on cancer drugs and the number of drugs funded weren’t good measures of success, patients struggling to gain access to potentially life-saving, or life-prolonging drugs say New Zealand is falling far behind other countries.

This has left some Kiwis setting up fundraising campaigns and going into debt in order to try and pay for treatment at private rates. An RNZ series found about 500 people are fundraising online to cover costs of non-funded treatments.

Since the beginning of May, the Health Select Committee has received 11 petitions for funding of new medicines, and a further nine were launched by new patient lobby group Patient Voice Aotearoa (PVA), last week.

PVA head Malcolm Mulholland said New Zealand funded far fewer drugs than other comparable countries, and spends less money. Mulholland’s wife Wiki was diagnosed with advanced breast cancer last year, and he wants to see a change in how medicines are funded.

Along with other advocates, Mulholland set up PVA in a bid to push for change, and help others organise and campaign for the best results.

The Mulhollands have been advocating for the funding of Ibrance, which prolonges life for advanced breast cancer sufferers.

“We’re so far behind the rest of the world. We get a constant stream of people needing a drug, which is not funded in New Zealand… I just think it’s a crisis.”

Earlier in the month, Pharmac announced its plan to fund Kadcyla​ for breast cancer and Alecensa​ for lung cancer from December. It also planned to fund Ocrevus for relapsing remitting multiple sclerosis, and widen access to Esbriet for idiopathic pulmonary fibrosis.

But Wiki cannot use Kadcyla because she had a different kind of cancer, so their family’s push for Ibrance will continue.

Mulholland said it was about giving patients choice, so they could access the right medicine for them.

Clinicians often spoke about the importance of having “a higher number of tools in their toolbox”.

“We’re so far behind the rest of the world. We get a constant stream of people needing a drug, which is not funded in New Zealand… I just think it’s a crisis.”

That situation had been exacerbated over the past decade, with an explosion of modern medicines, which were backed up by good clinical data.

If New Zealand wants to catch up with the rest of the world, Pharmac’s budget for cancer drugs needs to at least double, he said.

Meanwhile, Blair Vining is campaigning for the creation of a national cancer agency.

Vining has stage-four bowel cancer, and is calling for a new agency to address cancer death rates, with responsibility for oversight of prevention, early detection, treatment, and survivorship. He said it should be well-funded and free from political interference, and should benchmark outcomes and report to the public.

What National wants

Last month, at the National Party annual conference, Simon Bridges unveiled his party’s cancer plan, which included the establishment of an independent cancer agency.

National dis-established the independent ministerial advisory committee Cancer Control NZ after 10 years, in 2015. And it never made a move towards establishing an independent cancer agency during its time at the helm.

However, health spokesman Michael Woodhouse said the calls for an independent agency had become more resolute and compelling in recent months.

Health spokesman Michael Woodhouse says National has heard patients’ calls for an independent national cancer agency, and would put this into place if successful in 2020. Photo: Lynn Grieveson

National said an independent agency would ensure consistency of diagnosis across the country, consistency of treatment and consistency of outcomes. It would be primarily responsible for the national cancer plan and key performance indicators across DHBs.

The opposition estimated the agency would cost $10m a year, and could be funded out of DHB baselines.

Woodhouse also said there was no doubt in his mind that Pharmac funding had been choked off.

National proposed ring-fencing a further $50m a year ($200m over four years) for cancer drugs, which had to be spent.

Woodhouse said he believed Pharmac’s “dispassionate” and evidence-based appraisal of treatments, including how many people would benefit, the cost and the scientific efficacy was a core part of the system. But there were still more medicines Pharmac wasn’t funding that it should be, and would like to be.

What the Government is expected to deliver

Clark has been mostly tight-lipped on the Government’s interim cancer strategy, which has been a long-time coming.

The former government’s national cancer plan lapsed in 2018, leaving a gap in strategic direction.

When asked about the delay, Clark said the Government had taken time to consult with key clinical experts, to ensure confidence the plan would make a real difference.

The plan would look at the full spectrum of cancer care and control – from prevention and screening, to treatment and palliative care.

The plan would feature “strong central leadership”, Clark said in a statement to Newsroom.

This statement could suggest the creation of a new agency to lead the charge. However, others involved in the cancer debate suggested the Government may be looking to set up a new business unit within the ministry.

“New Zealanders living with cancer deserve to have access to high quality care no matter who they are, or where they live.”

Clark also said Pharmac and the Government were “looking at options for early access to medicines”.

Again, the comment is purposefully vague, but could point to something like an interim drug fund.

Stuff reported the Labour Party campaigned on the establishment of an interim drug fund – similar to an early access scheme in the UK. Pharmac’s briefing to the incoming minister in 2017 cautioned against funding access to new medicines, without high-quality evidence.

Meanwhile, Clark and the Prime Minister have announced $25m to replace 12 linear accelerators – used in radiation treatment – as well as putting the machines in Hawke’s Bay, Taranaki and Northland.

While the public debate had focused on cancer medicines it was important to remember there was more to cancer care than just drugs, including surgery and radiation treatment, Clark said.

“The recent debate over funding for cancer drugs has been intense and emotive. I completely understand the desire of people living with cancer for the latest medicines – even where the evidence for those drugs is still emerging,” Clark said, adding that everyone wanted to see action on cancer.

“New Zealanders living with cancer deserve to have access to high quality care no matter who they are, or where they live.”

* Read yesterday’s report on the issue of transparency in the debate over medicines funding here.

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