A woman with a rare neuromuscular disease who has only a year to live, has complained to the Ombudsman about a decision by Pharmac to deny her treatment.
Freda Evans is one of only six people in New Zealand with Pompe disease.
She says the only treatment is the drug Myozyme, which is not currently funded in New Zealand, but is in 45 other countries.
Her doctors applied to Pharmac under a new exceptional circumstances policy for the drug, but were turned down.
The agency said it is already considering whether to add Myozyme to its schedule of funded drugs, and is unable to consider applications under the exceptional circumstances category.
Myozyme is estimated to cost about $330,000 - $650,000 per year.
The Organisation for Rare Diseases said Pharmac is manipulating the process.
Executive director John Forman said the new system was touted by Pharmac and the Government as delivering on a promise to sort out problems of access to medicines, but they were just keeping patients in limbo.
Pharmac said it can't comment while the case is before the Ombudsman.
