{"id":547,"date":"2019-08-20T20:40:30","date_gmt":"2019-08-20T20:40:30","guid":{"rendered":"https:\/\/clladvocates.nz\/?p=547"},"modified":"2019-09-12T01:43:19","modified_gmt":"2019-09-12T01:43:19","slug":"pharmacs-dismal-ranking-little-surprise","status":"publish","type":"post","link":"https:\/\/clladvocates.nz\/?p=547","title":{"rendered":"Pharmac’s dismal ranking little surprise to cancer patients"},"content":{"rendered":"

[vc_row row_height_percent=”0″ override_padding=”yes” h_padding=”2″ top_padding=”3″ bottom_padding=”3″ overlay_alpha=”50″ gutter_size=”3″ column_width_percent=”100″ shift_y=”0″ z_index=”0″][vc_column width=”1\/1″][vc_custom_heading heading_semantic=”h1″ text_size=”h1″]Pharmac’s dismal ranking little surprise to cancer patients[\/vc_custom_heading][vc_column_text]Republished with permission from Graham Adams. Sourced from NOTED.co.nz<\/a><\/em><\/p>\n

By Graham Adams<\/a>
\nAug 16, 2019<\/p>\n

New Zealand has the worst record of funding new treatments among 20 OECD countries.<\/strong><\/p>\n

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.<\/p>\n

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 \u2014 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.<\/p>\n

The news of our dismal performance came\u00a0in a report commissioned by Medicines New Zealand<\/a>, a lobby group for the pharmaceutical industry. It showed that of\u00a0304 modern medicines for a range of diseases funded internationally between 2011-17, only 17 were publicly funded in New Zealand.<\/p>\n

Australia funded 83, the UK 174, and Germany 178.<\/p>\n

And of 70 new cancer drugs funded across the 20 nations in that period, New Zealand had funded only six. Australia\u2019s tally was 26.<\/p>\n

Arthritis, asthma, diabetes and cardiovascular disease, among other conditions, fared poorly too.<\/p>\n

For all the claims made about Pharmac\u2019s 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 \u2014 particularly when revolutionary cancer treatments are being developed at an astonishing speed.<\/p>\n

While Pharmac\u2019s CEO Sarah Fitt is undoubtedly correct in claiming that\u00a0a \u201csimple count of [funded] medicines won\u2019t tell you how effective a health system is\u201d<\/a>, she is glossing over the fact that her organisation\u2019s 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.<\/p>\n

As the report noted, the OECD average for approving new treatment from the time of a drug\u2019s registration is 233 days. In New Zealand, it is 512.<\/p>\n

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 \u2014 ibrutinib and venetoclax \u2014 through Australia\u2019s hospital system. However, New Zealanders with CLL like me can only obtain these drugs through a clinical trial, a drug company\u2019s compassionate access scheme or personally paying more than $130,000 a year (which often means begging from strangers on Givealittle).<\/p>\n

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.\u00a0Speaking to the Health select committee last week<\/a>, he had to fight back tears as he recounted how ibrutinib \u2014 which he has been able to access through a compassionate access scheme \u2014 had saved his life after he had transfusion-dependent bone marrow failure as a consequence of CLL.<\/p>\n

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 \u2014 time that otherwise would have been denied to him, and to the patients he serves.<\/p>\n

Writer and TV presenter Clive James is undoubtedly the most famous face of the revolution in CLL drugs. In 2015,\u00a0he said he was \u201cembarrassed\u201d<\/a>\u00a0to still be alive after he had predicted a year earlier that his death \u2014 from the double-whammy of chronic lymphocytic leukaemia and emphysema \u2014 was likely within months.<\/p>\n

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.<\/p>\n

In a book of poems published in 2017 \u2014 titled for obvious reasons\u00a0Injury Time<\/em>\u00a0\u2014 he described ibrutinib as a \u201clittle cluster-bomb of goodness\u201d.<\/p>\n

My own experience of coming back from death\u2019s 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: \u201cI\u2019ve just read your oncologist\u2019s report. It makes for pretty grim reading, doesn\u2019t it?\u201d<\/p>\n

I had been aware that my prospects weren\u2019t 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 \u2014 due to a chromosomal aberration termed \u201c17p deletion\u201d \u2014 was difficult to treat but I didn\u2019t realise just how slim the chances of conventional treatment working were.<\/p>\n

I had naively assumed there would be\u00a0something<\/em>\u00a0in the oncologist\u2019s 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: \u201cStandard chemotherapy works well for some 17p patients, but the numbers are very, very small.\u201d<\/p>\n

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.<\/p>\n

Now, nearly four years later, I am still in remission.<\/p>\n

When the drug stops working, if I\u2019m very lucky I\u2019ll get access to a clinical trial for venetoclax and the drug will be provided free. But if I don\u2019t manage to be accepted onto a trial, I\u2019ll have to bankrupt myself to stay alive \u2014 as many New Zealand cancer sufferers are doing right now.<\/p>\n

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.<\/p>\n

Ibrutinib was first registered by Medsafe in New Zealand in 2015 and subsequently prioritised for funding by Pharmac in 2016.<\/p>\n

Venetoclax was registered in 2017 and, last September, Pharmac\u2019s Pharmacology and Therapeutics Advisory Committee recommended venetoclax \u201cbe funded with a high priority\u201d for CLL patients with aggressive disease, including 17p patients.<\/p>\n

In April this year, the recommendation was repeated as a high priority for funding.<\/p>\n

Now, nearly a year later after the recommendation was made last September, the drug remains unfunded.<\/p>\n

It is worth noting that Pharmac would undoubtedly be able to buy ibrutinib and venetoclax at a much lower price than its \u201crack rate\u201d, which could make it not much more expensive per patient than hospital-based dialysis over a year.<\/p>\n

Dr Graham wants Pharmac to fund ibrutinib and venetoclax for patients with aggressive CLL disease. He told NOTED: \u201cThe timeframes are simply unacceptable for treating malignant diseases generally, and CLL specifically. People are dying waiting for a decision on funding.\u201d<\/p>\n

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.<\/p>\n

But for the small number who don\u2019t respond to such treatment, their disease quickly becomes a life-or-death matter.<\/p>\n

The brutal truth, as he puts it, is that while Pharmac vacillates, people die.[\/vc_column_text][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

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