Petition on access to medicines for rare diseases

Lysosomal Diseases New Zealand

Petition on access to medicines for rare diseases to be presented at 12.30pm, Tuesday 13 December 2016.

This presentation was rescheduled because of the November earthquake. Samantha Lenik is the lead petitioner in our efforts to ensure Pharmac is adequately resourced to implement its rare diseases policy, and gives urgency to implementing its policy on treatments for rare diseases. She will be joined at Parliament by her supporters at 12.30pm next Tuesday 15 November, to present her petition.

LDNZ welcomes attendance by supporters from any rare disease group at the presentation. We have made it clear in our petition and in all related publicity that this is not just about one treatment for one disease, but is about fair access to medicines for all patients with rare diseases. Read more at www.ldnz.org.nz

Pharmac’s new policy on funding treatments for rare diseases is not a perfect one, but it was a huge step in the right direction. But since it was announced over 2 and ½ years ago, there has been very slow progress in implementing the policy. Pharmac was starved of funds in budget restrictions, and then failed to give any urgency to putting this policy in place. Only a tiny number of rare disease patients have gained new access to treatments.

The petition calls for action on the funding and on the urgency given to implementing the new policy.

Will you join us on Tuesday 13th? We will be gathering at the Seddon Memorial just before 12.30pm.

We want no patient left behind – no family forgotten.

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