‘Some of us will die’, boy tells parties

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“Together let’s keep moving” is the plea of Gore High School pupil Ryan O’Rourke to New Zealanders.

The 17-year-old has a rare muscle disorder, spinal muscular atrophy type three, and has made a video which he has posted on the Patient Voice Aotearoa (PVA) website in support of the group’s petition.

The petition, launched by PVA chairman Malcolm Mulholland, asks the House of Representatives to urge the Minister of Health to conduct an external reform of Pharmac and to double the budget Pharmac currently receives immediately, with a plan to triple the budget within two years.

Pharmac is the New Zealand Crown entity that decides which medicines and pharmaceutical products are subsidised for use in the community and public hospitals.

When writing the script for the video it seemed appropriate to use the Labour Party campaign slogan, Ryan said.

“Labour wants to keep moving, but what about us with rare disorders?” he said.

In the past two years, Ryan one of 35 young New Zealanders who have the disease has lost the use of his legs and had to use a wheelchair.

However, there was a drug called Spinraza that would stop the atrophy.

“Without it, some of us will stop moving altogether and some of us will die.

At present, Spinraza was one of 110 medicines Pharmac had approved but did not fund.

“Pharmac’s budget isn’t big enough.”

Time was running out for Ryan, because if the drug was funded it would only be available for those 18 years old and under.

It cost about $6million a year to provide Spinraza to those who qualified to receive it, he said.

Ryan urged people to sign the petition “so the patient voice across New Zealand is heard” and the Government would increase Pharmac’s funding for rare disorders.

The petition would close on October 16.

In the past month, political parties had announced their health policies, and two had pledged to increase Pharmac’s funding.

The Labour Party would increase funding by $200million for all medicine; National Party policy was to increase funding to Pharmac and create a rare disorder fund worth $20million over four years.

Ryan did not think either of the parties had pledged enough.

He also queried the health areas the Labour Party had committed to spending money on, including $176million on dental care.

“Dental is important but comparing dental work to rare disorders, that’s chalk and cheese.”