Shopping List For Life-saving Drugs In the Spotlight

Tuesday 18 June For Immediate Use

Winners and Losers: Shopping List For Life-saving Drugs In the Spotlight

New Zealanders are being urged to speak up and tell the Government which people with health problems should receive life-saving drugs, who should miss out, and why.

For the first time, PHARMAC, the Government’s medicines funding agency, is giving the public the chance to have a say on the decision-making criteria it uses to stock the national drug cabinet.

Critical to the debate will be whether patients with rare diseases get access to life-restoring treatments or are abandoned because the medicines are considered too expensive.

An urgent example of the situation which rare disease patients face in New Zealand is Soliris, a life-saving drug developed to extend the lives of people living with the rare and fatal blood disorder Paroxysmal Nocturnal Haemoglobinuria (PNH). PHARMAC has proposed to not fund the drug and is seeking public response to July 31.

In parallel with the Soliris funding consultation, New Zealanders have to the end of August to make a submission to PHARMAC on the criteria it employs when making decisions on drug funding.

Groups representing people with rare diseases have strongly criticised PHARMAC's current decision criteria for lacking considerations of equity and fairness, and for not taking into account the cost to society when patients are allowed to die despite life-saving treatments being available.

Daniel Webby, a spokesperson for the PNH Support Group – and who has PNH – says he is concerned that people are not aware the consultation is happening.

“It is the first time that PHARMAC has decided to consult the public on such an important issue, but we don’t think many people are even aware that it's happening.”

Mr Webby said he had his doubts about the integrity of the consultation processes, “In the case of the Soliris consultation, PHARMAC have attempted to present patients with an extremely rare disease as an unwanted burden to the health system. Not only is this discriminatory, PHARMAC have used misinformation to support their case. How is this supposed to lead to an informed debate?"

“Unfortunately in the case of PNH sufferers, rejecting funding of the Soliris treatment is a death sentence.

“But all we can do is take part in good faith, and hope that New Zealanders get behind us, not just for our sake, but for the benefit of all those who have the misfortune to suffer from a rare disease."

Mr Webby said PHARMAC did not acknowledge that the gains offered by treatments such as Soliris are often significantly greater than those offered by the "low-cost, high-volume" treatments their current funding model favours.

Citing the example of cholesterol-lowering medication; “While this has a low per-patient cost, the health-gain offered is a fraction of that offered by Soliris. PNH patients will lose, on average, two decades of life.”
“Soliris could prevent this and yet PHARMAC are proposing not to fund it, at an estimated cost for eight patients of $4 million. By contrast PHARMAC spent $64 million on cholesterol lowering medications in 2012.”

Mr Webby said that unlike some diseases that can be attributed to lifestyle factors, PNH strikes people through no fault of their own. The average age of diagnoses is mid-30s, and the median survival is just ten years.

Mr Webby urged people to consider the loss to the greater community, to parents, siblings, children, wider family and friends, and the lost contributions of the New Zealanders if their health was not restored.
“People are struggling with a devastating disease and are essentially being told by PHARMAC: your lives are not worth saving.”

New Zealand is an anomaly in the western world when it comes to this drug. The Soliris treatment can be accessed via public health-systems in Australia, many European countries, England, Canada, parts of the Middle East and many Asian countries.

“By taking part in the consultation people can express their support for a fairer allocation of health resources to patients with rare diseases, Mr Webby said.
“We urge people to make a submission to PHARMAC on both the Soliris and Decision Criteria consultations. We also urge people to attend the public meetings to inform health officials in person, that patients with rare diseases, and PNH patients in particular, should not be abandoned by the health system."

PHARMAC is holding public meetings in a number of cities and towns over the coming weeks.

The dates, times and venues are listed below:

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ADDITIONAL INFORMATION
For more information about PNH please visit www.pnhsanz.org.nz
For more information on PHARMAC's decision criteria consultation please visit http://www.pharmac.health.nz/about/operating-policies-and-procedures/decision-criteria-consultation
For more information on PHARMAC’s proposal to decline funding for Soliris please visit http://www.pharmac.health.nz/news/item/proposal-to-decline-a-funding-application-for-eculizumab

ENDS

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