25 Jan 2013

Campaign for expensive drug raises ethical questions

9:49 pm on 25 January 2013

An Auckland University professor says there are ethical issues involved in a campaign demanding that the Government's drug-buying agency Pharmac pay for an expensive medicine.

Eight patients with a serious blood disease are getting help from a communications firm funded by the drug's manufacturer.

The patients have a rare disorder known as paroxysmal nocturnal haemoglobinuria (PNH) and want Pharmac to pay for the medicine eculizumab, sold as Soliris, at a cost of $500,000 a patient per year.

Australian firm Viva Communications has confirmed it is helping to publicise the case, funded by drug-maker Alexion.

But associate professor of philosophy Tim Dare says it raises ethical issues.

"This is not to say that the concerns of these patients are not legitimate - and they're in a tragic situation.

"But once you allow media companies and drug companies to come in directly like this, illnesses or conditions which have a single profitable cure are bound to be able to make more noise, to get more media coverage."

Viva Communications principal Kirsten Bruce says Alexion has a right to promote its drug and the patients need help.

"If a drug company doesn't assist with the funding of the campaign, then who will assist with the funding of the campaign to get it off the ground?

"And will the media be interested in running a story? Someone has to create that story."

Ms Bruce says the patients approached Alexion themselves and the amount of funding from the drugs company in New Zealand is confidential.

In a statement, Alexion says the New Zealand PNH patient support group asked for an unrestricted educational grant from it for media relations and other activities, and Viva Communications is providing this.

Pharmac's main clinical advisory committee will meet again in February to consider more information from its haematology subcommittee about whether to fund the drug.