Herald on Sunday editorial: Miracle cure, morally derelict

5:30 AM Sunday Jan 27, 2013

Andrea Murphy is an attractive, youthful 52-year-old who says her life has been saved by an expensive "miracle" drug. She and seven other sufferers of PNH, an extremely rare blood and immune system disorder, are pleading with the government to fund that drug, Soliris, at a cost of $500,000 per person - a total $4 million a year for the rest of their lives.

PNH strikes in the prime of life, and can be a death sentence. Sufferers endure abdominal pain, shortness of breath and debilitating fatigue, culminating in blood clots and eventual organ failure. It's miserable, and none of us would wish it on our worst enemies.

The drug Soliris can prevent or reduce complications, and prolong the lives of those with the disorder. It is also, according to Forbes, the world's most expensive drug. And therein lies the conundrum.

Should the government heed the televised pleas of PNH sufferers like Murphy, who says it's a "crime" for drug-buying agency Pharmac to deny terminally ill people the treatment? Or should the government, perhaps, continue to fund the insertion of inexpensive plastic grommets in the ears of thousands of pre-schoolers who suffer glue ear?

These are the sorts of decisions Pharmac and the National Health Committee must make every month, under pressure from heart-tugging public relations campaigns.

The public pleadings of Murphy and other PNH sufferers this week were, as it happens, orchestrated by Viva, a Sydney PR firm that represents Alexion Pharmaceuticals. Alexion is a NASDAQ-listed firm that last year projected a net revenue of $1.35 billion from sales of Soliris around the world. It's not just a world leader in the medical laboratory; it's a world leader in arm-twisting governments to fund its extortionately-priced drug. It provided an "unrestricted educational grant" to fund the PNH Support Association of NZ campaign and petition - as it had funded similarly slick campaigns run by its PR firms in Australia and Canada.

These campaigns are effective: 24,000 Australians signed a petition supporting that nation's 70 PNH sufferers, forcing the federal government to begin funding the drug in 2011.

The Canadian government also capitulated - though that nation's provinces banded together to knock down Alexion's prices. They were aided in their hardball negotiations by the discovery that Alexion was supplying Soliris to the US at half the price it was quoting to the rest of the world.

In New Zealand, Pharmac should carefully note the drug company's ability to cut into its billion-dollar margin, when it suits.

Alexion Pharmaceuticals has espoused the benefits of Soliris; the PR campaigns have been liberally peppered with emotive attacks on governments that fail to fund the drug. In truth, these cynical campaigns exploit the pain of the PNH sufferers who the company purports to care about, holding people like Andrea Murphy and the New Zealand taxpayer to ransom.

The children of south Auckland, meanwhile, have no Sydney PR firm to call on, no multimedia campaigns, no government lobbyists. The National Health Committee is considering cutting back on the insertion of grommets, in the hope of trimming $4.4 million from the public health budget to redirect to more urgent priorities. That may well mean more kids with glue ear and impaired hearing.

There are good grounds to review New Zealand's comparatively high expenditure on grommets, and certain other procedures. But the public needs to be assured that such critical funding decisions are made by reference to solid clinical and cost-benefit analyses - not in response to the morally derelict posturings of a billion-dollar drug company.

- Herald on Sunday