Tocilizumab, Drug to Treat Castleman’s Disease ‘Not Funded in New Zealand’

Tocilizumab

Only available to the wealthy in NZ

The employer of a 54 year old Gene Chase from Whangaparaoa is appealing for donations to help pay for treatment of his Castleman’s Disease.

According to an article by the NZ Herald, Castleman’s disease

is similar to lymphoma – the cancer that affects the lymph nodes or glands – and hasled (sic) to him suffering dramatic weight loss, nausea and diarrhoea, bouts of high fever and crumbling teeth…”

Fortunately there is a treatment, unfortunately NZ’s medicines agency Phamac won’t pay for it

“The family were then told the drug he needed to treat it, Tocilizumab, was not government-funded and would be available only through clinical trials.” source

Which is ridiculous because Tocilizumab (AKA Actemra and RoActemra), a form of humanized monoclonal antibody used as an immune-suppressant, has been around for almost a decade for the treatment of autoimmune diseases, multiple myeloma and prostate cancer.

It was approved for the treatment of Castleman’s Disease in Japan in 2005. In 2009 the EC the European Medicines Agency and Australia’s Therapeutic Goods Administration gave it the go-ahead. It is also licensed for use in the USA. source

Australia also lists it on its pharmaceutical benefits scheme, which means that the patient never pays more than $36.90 for a 20ml injection of the drug.

In the UK the cost benefit of using the drug is acknowledged:

“the drug costs £9,295/year for 70 kg patient for RA treatment. Calculations suggest a base‑case incremental cost-effectiveness ratio (ICER) of £19,870 per incremental quality‑adjusted life years (QALYs) for patients with DMARD resistance.” source

In New Zealand:

The treatment is administered every 3 weeks and costs $2,500 a time ($43,000 per annum).

“Auckland DHB clinical haemotologist Dr Paul Ockelford said it was difficult for Pharmac to fund drugs for rare diseases because the high costs did not balance out.” source

That must be hard for anyone who may benefit from Tocilizumab, particularly if they know that New Zealanders elsewhere in the world have funded access to the drug. Kiwis living across the Tasman may access it for under $40.

You may also be interested in

Kiwis Missing Out On Vital Medicines, With Fatal Consequences (ENZ.org May 2010)

“Kate Newton in the Dominion Post today writes about a new Government report that confirms that high cost, novel drugs aren’t being made available in New Zealand and some low-cost but highly specialised drugs are difficult to access too.  It appears that New Zealanders are not being given access to  medicines that are available in countries such as Australia, with fatal consequences…

It’s been known for some time that Pharmac doesn’t allow New Zealanders to access new medicines for five to 10 years after they are widely used elsewhere in the world, and then it waits until they are generic until they are widely used. The system keeps prices down for the Government but has been criticised for restricting drug choices and delaying the arrival of some new medicines…”more

Rip Off New Zealand – Pharmacy Prices a Bitter Pill (E2NZ.org Dec 2013)

New Zealand’s pharmacy prices are already among the highest in the OECD with a wholesale mark up of 10% over the manufacturer’s price plus the pharmacy’s mark up (in the USA the wholesale mark up is around 2-4 %). But that doesn’t stop unscrupulous owners from over charging visitors who need essential medications.

One chemist in a holiday area was charging an additional $10 per prescription, supposedly to cover staff holiday pay rates, on Boxing Day. In parallels to a famous Dickensian tale, the medication was to treat a small boy’s leg infection…

Pharmac announced that it will at last fund a drug to treat Alzheimer’s – more than a decade after it became available (May 2010)

They waited until until one of the original drugs, containing donepezil, came off patent and a generic version was offered at a greatly reduced price.  More than 40,000 people in New Zealand are believed to have dementia. More than half have Alzheimer’s.

A drug credited with saving lives is facing unacceptable delays for public funding

says a cancer specialist. MabThera, (rituximab, commonly used in other countries) is one of a new generation of smart drugs like Herceptin that targets specific characteristics of cancer cells, is already funded for an aggressive form of lymphoma. But the application for it to be used for follicular lymphoma, which makes up about a third of the 770 lymphoma cases in New Zealand, has languished among drug agency Pharmac’s decision-making processes” said Auckland oncologist Peter Browett. (source)

Still think that New Zealand has a first world health service? Read our article from yesterday New Zealand Hospitals “Start Care Rationing” as 500 Nursing Graduates Struggle to Find Work

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6 thoughts on “Tocilizumab, Drug to Treat Castleman’s Disease ‘Not Funded in New Zealand’

  1. New Zealand falls short of getting up to international standards, yet people are led to believe it has a first world health service.

    Its not just first world medicines that Kiwis are losing out on – restricted access to international clinical trials also impacts adversely on their health.

    The survival rate for bone cancer sufferers in New Zealand is lower than for their peers overseas:


    Bone cancer more deadly in NZ

    “New Zealand’s survival rates were half that of Australia’s and considerably lower than those in America ( 63 per cent), Scotland (67 per cent) and Canada (68 per cent).

    Cancer specialist Dr Ruth Spearing, who supervised the project, said the study highlighted the need for young people to be given access to international clinical trials…

    “It really highlights just how important being involved in cutting-edge, modern treatment [is]. We’ve got to get up to international standards.”

    An extra $650,000 over the next two years is woefully stingy and will probably do very little to improve survival rates:

    Last month, Health Minister Tony Ryall announced an extra $650,000 over two years to help improve cancer services for young people.

    It was hoped the funds, which included the development of a national clinical network, would help health professionals understand why New Zealand’s rates were so far below international standards.

  2. http://fmacskasy.wordpress.com/2013/03/04/one-should-judge-a-society-by-how-it-looks-after-the-sick-and-vulnerable-part-rua/
    http://fmacskasy.wordpress.com/tag/muscular-dystrophy-association-of-new-zealand/
    basically, if you want cheap generic blood pressure meds, you are ok. If you are unfortunate enough to have a rare condition, usually what happens if the community will try to raise enough money to send you to the U.S., or somewhere where they have the resources and will to treat the condition. New Zealand is one of those places where they cover a small, dense circle of really basic society health needs, using algorithms such as likelihood of survival.

  3. How can something cost £9k per year in the UK but over double that in NZ. Is it supply & demand because NZ buys less if it? Or is someone shuffling the figures to justify not funding it? Hmmmmm

    • There does appear to be a bit of ‘creative figure work’ going on, doesn’t there?

      Regardless of that Pharmac do seem to have a policy of waiting for a drug to go generic before they’ll release it. Of course New Zealanders, being a captive population as it were, have no option other than to stump-up or pay the ultimate price.

      Either way User Pays, it is the New Zealand way.

  4. Thank you for telling people the real truth behind the news. Hopefully Gene will get the treatment he needs and pharmac will get a dose of compassion.

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