A petition with thousands of signatures fighting for access to a drug to help those affected by spinal muscular atrophy (SMA) has been delivered to Parliament today and accepted by National Party deputy leader Paula Bennett.
The petition asking Pharmac to fund the drug gained 12,673 signatures, urging immediate funding as "this drug reduces the risk of dying prematurely".
The treatment drug Spinraza is available in 49 other countries, but not in New Zealand.
According to the Muscular Dystrophy Association, SMA is a "genetic disease affecting the part of the nervous system that controls voluntary muscle movement". It can cause progressive wasting of muscle and loss of some motor neurons.
Petition advocate Fiona Tolich who has SMA said she has seen evidence that this treatment works overseas.
"It rips at my heart to know that there is something that will stop the progression of this disease and we don’t have access to it yet," Ms Tolich said.
However, Pharmac Operations Director Lisa Williams said despite short term benefits, they are waiting for evidence that Spinraza has long term effects.
Ms Williams understands that the publicly known price of the drug is around $1 million, per person, per year, however if Pharmac were to fund it, there would be a confidential price negotiation.
Charlotte Yeoman was diagnosed with SMA one-year-ago, and her mother Kristie Yeoman says if she was given the Spinraza treatment she would be able to walk.
"They need this treatment, time is not in our hands," Ms Yeoman said.
Ms Bennett accepted the petition outside parliament.
By Abbey Wakefield
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