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Graham Adams was four days away from buying the first doses of a $130,000-a-year cancer treatment when he was put in a clinical trial for an experimental drug combination. Photo/Jane Ussher/North & South.

Pharmac's dismal ranking little surprise to cancer patients

 New Zealand has the worst record of funding new treatments among 20 OECD countries.

The news this week that New Zealand has been rated the worst among 20 OECD countries for funding modern medicines and pharmaceutical investment overall will come as a surprise to many people but perhaps not to cancer patients.

Cancer treatment gets so much media attention that patients are often acutely aware of what ground-breaking drugs would be available to them if they had the good fortune to live in other developed countries — including Australia. As a result, there is a regular parade of cancer-stricken supplicants to MPs and Parliament begging for their lives and alleging that the funding system overseen by Pharmac is deficient.

The news of our dismal performance came in a report commissioned by Medicines New Zealand, a lobby group for the pharmaceutical industry. It showed that of 304 modern medicines for a range of diseases funded internationally between 2011-17, only 17 were publicly funded in New Zealand. 

Australia funded 83, the UK 174, and Germany 178.

And of 70 new cancer drugs funded across the 20 nations in that period, New Zealand had funded only six. Australia’s tally was 26.

Arthritis, asthma, diabetes and cardiovascular disease, among other conditions, fared poorly too.

For all the claims made about Pharmac’s unique approach to funding drugs much more cheaply than in other countries, it is increasingly apparent its strategy of delaying buying drugs until their prices come down is not fit for purpose — particularly when revolutionary cancer treatments are being developed at an astonishing speed.

While Pharmac’s CEO Sarah Fitt is undoubtedly correct in claiming that a “simple count of [funded] medicines won’t tell you how effective a health system is”, she is glossing over the fact that her organisation’s tardy funding decisions amount to rationing by delay for drugs that have proven to be very effective in a battery of clinical trials and medical practice. 

As the report noted, the OECD average for approving new treatment from the time of a drug’s registration is 233 days. In New Zealand, it is 512.

As a cancer patient myself, I am very aware of the life-saving drugs available for free in public health systems overseas. I have chronic lymphocytic leukaemia (CLL) and one thing is starkly apparent to me. If my New Zealand-born brother who lives in Brisbane is diagnosed with the same aggressive form of the disease as me, he will be eligible for free access to two wonder drugs — ibrutinib and venetoclax — through Australia’s hospital system. However, New Zealanders with CLL like me can only obtain these drugs through a clinical trial, a drug company’s compassionate access scheme or personally paying more than $130,000 a year (which often means begging from strangers on Givealittle).

Ibrutinib and venetoclax are targeted drugs that have transformed the treatment landscape for those with CLL. Just how revolutionary ibrutinib has been is something Tauranga consultant physician Dr Neil Graham knows only too well from personal experience. Speaking to the Health select committee last week, he had to fight back tears as he recounted how ibrutinib — which he has been able to access through a compassionate access scheme — had saved his life after he had transfusion-dependent bone marrow failure as a consequence of CLL. 

He told the committee that ibrutinib has put him into remission and he has been able to continue working productively for the past five years — time that otherwise would have been denied to him, and to the patients he serves.

Related: How can New Zealanders get access to new cancer treatments? | The great disparity between treatment for rich and poor

Writer and TV presenter Clive James is undoubtedly the most famous face of the revolution in CLL drugs. In 2015, he said he was “embarrassed” to still be alive after he had predicted a year earlier that his death — from the double-whammy of chronic lymphocytic leukaemia and emphysema — was likely within months. 

Such a prognosis was undoubtedly correct at the time he signalled his imminent demise in 2014 but, soon after that, he began treatment with ibrutinib. His health rallied and he is still alive and writing.

In a book of poems published in 2017 — titled for obvious reasons Injury Time — he described ibrutinib as a “little cluster-bomb of goodness”.

My own experience of coming back from death’s door is similar to that of Dr Graham and Clive James. I knew in 2015 that I was in very serious trouble when a doctor told me rather brutally: “I’ve just read your oncologist’s report. It makes for pretty grim reading, doesn’t it?”

I had been aware that my prospects weren’t very good but the oncologist clearly had been far franker writing to his colleague about my dire prospects than he had been to me in person. I understood the aggressive variant of CLL I have — due to a chromosomal aberration termed “17p deletion” — was difficult to treat but I didn’t realise just how slim the chances of conventional treatment working were.

I had naively assumed there would be something in the oncologist’s armoury that would help. In fact, I learned later that conventional chemotherapy treatment has only a five per cent chance of working for 17p deleted patients. As one haematologist told me: “Standard chemotherapy works well for some 17p patients, but the numbers are very, very small.”

By extreme good luck, I was put in a clinical trial for an experimental drug combination. It held back the progression of my disease for only six months but it made me eligible for another clinical trial of a second-generation version of ibrutinib.

Now, nearly four years later, I am still in remission.

When the drug stops working, if I’m very lucky I’ll get access to a clinical trial for venetoclax and the drug will be provided free. But if I don’t manage to be accepted onto a trial, I’ll have to bankrupt myself to stay alive — as many New Zealand cancer sufferers are doing right now.

However, if I were a citizen of Australia, as my brother is, I would be eligible to have the drug funded for a cost of around $33 a month.

Ibrutinib was first registered by Medsafe in New Zealand in 2015 and subsequently prioritised for funding by Pharmac in 2016.

Venetoclax was registered in 2017 and, last September, Pharmac’s Pharmacology and Therapeutics Advisory Committee recommended venetoclax “be funded with a high priority” for CLL patients with aggressive disease, including 17p patients.

In April this year, the recommendation was repeated as a high priority for funding.

Now, nearly a year later after the recommendation was made last September, the drug remains unfunded.

It is worth noting that Pharmac would undoubtedly be able to buy ibrutinib and venetoclax at a much lower price than its “rack rate”, which could make it not much more expensive per patient than hospital-based dialysis over a year.

Dr Graham wants Pharmac to fund ibrutinib and venetoclax for patients with aggressive CLL disease. He told NOTED: “The timeframes are simply unacceptable for treating malignant diseases generally, and CLL specifically. People are dying waiting for a decision on funding.”

There are about 2000 CLL patients in New Zealand. Dr Graham says most will respond very well to standard chemotherapy and may get remissions of up to 10 years, which is counted as the nearest thing to a cure in treating cancer.

But for the small number who don’t respond to such treatment, their disease quickly becomes a life-or-death matter.

The brutal truth, as he puts it, is that while Pharmac vacillates, people die.

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