Patients with rare blood disease urge funding of drug

Patients with a rare blood disease want Pharmac to fund an expensive new medicine.

The agency is considering an application from Alexion, a drug company, to fund a medicine known as Eculizumab, which is sold as Soliris. It costs about $500,000 year per patient, but is believed to prolong life

Soliris treats a rare blood disease, paroxysmal nocturnal haemoglobinuria.

Medical specialists say 19 or 20 people in New Zealand have PNH. A support group is urging Pharmac to fund the drug, which costs about $500,000 year per patient, but is believed to prolong life.

Haematologist Humphrey Pullon of Waikato hospital said the drug works, but Pharmac is dragging its heels over the cost.

The agency said specialist advisers are still considering the matter.

Pharmac's main clinical advisory committee considered the issue last February but has called for more information.

Medical director Peter Moodie said the decision must be thorough.

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