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Urgency sought for rare disease treatment

NZ Newswire logoNZ Newswire 12/12/2016

Urgency needs to be given to implementing Pharmac's policy on funding treatments of rare diseases, the organisers of a petition to parliament say.

The petition from Lysosomal Diseases NZ to Health Minister Dr Jonathan Coleman is due to be presented on Tuesday.

Lead petitioner Samantha Lenik says Pharmac finally established a policy for funding treatments of rare diseases two-and-a-half years ago and set aside a special rare disease drugs fund.

But she says little progress had been made in improving funded access to the eight treatments signalled when the special fund was set up.

The mother-of-two suffers from a rare and debilitating disease called Pompe, which she shares with 10 other New Zealanders.

LDNZ says it welcomes attendance by supporters from any rare disease group at the presentation.

It says the petition isn't about one treatment for one disease, but is about fair access to medicines for all patients with rare diseases.

"Pharmac was starved of funds in budget restrictions, and then failed to give any urgency to putting this policy in place," it said.

"Only a tiny number of rare disease patients have gained new access to treatments."

The presentation of the petition was postponed from November because of the Kaikoura earthquake.

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