'Our kids' lives are in your hands': Protest to reform Pharmac held in Hastings

Stacey Reading (left), Rachel Shaw and their families were part of close to 30 people that protested at the Hastings clock tower on Wednesday. Photo / Shannon Johnstone

"Our kids' lives are in your hands."

This was mother Rachel Shaw's message to Pharmac at the Hastings Lie Down for Life protest.

Held by Patient Voice Aotearoa, the protests were held at 11 locations around the country, including at the Hastings clock tower.

In Wellington, a 100,000-signature petition by Patient Voice Aotearoa demanded Pharmac be externally reformed and its budget doubled with a plan to triple it in two years.

Protests were attended by those who are affected by rare disorders, chronic illnesses and cancers; their families and other supporters.

As it was raining in Hastings, close to 30 people stood up for five minutes silence at 12.30pm.

Shaw has two children who have Spinal Muscular Atrophy (SMA), a rare disorder that progressively destroys motor neurons.

A life-changing SMA treatment called Spinraza is available in Australia, but is not funded in New Zealand.

People gathered in Hastings' CBD as part of the nation-wide Lie Down for Life protest. Photo / Shannon Johnstone

Wearing a t-shirt that read "we are worth it" Shaw said "every day they don't have medication is a day they lose strength".

"We have to see change, we have to have hope, we are worth it, our kids are worth it, we cannot access treatment any other way," she said.

"We need our country to value our kids."

She said the fact the issue has to be protested is "disgusting".

"It shouldn't have to be a fight".

Stacey Reading's 9-year-old son has SMA type two and she agreed it is "terrible" that it has come to a protest.

"There's no other words for it. Life is not valued in New Zealand at all.

"[Pharmac] need to stand up for New Zealanders and support New Zealanders like they say they do."

She said they joined in the protest because she wanted to show Liam that "no matter what we're all together, all fighting and we'll never, ever give up".

A list of nearly 50 names of New Zealanders who have died because of a lack of access to drugs was read out.

"New Zealand is at the bottom of the developed world when it comes to funding medicines that either save lives, prolong lives, or improve lives," Patient Voice Aotearoa chairman Malcolm Mulholland said.

"Kiwis are dying as a direct result of this.

"It is a disgrace, and completely at odds with the current Government's 'be kind' rhetoric. It is quite simple - unless the Government acts, New Zealanders will continue to die without adequate access to modern medicines."

Patient Voice Aotearoa trustee Fiona Tolich said close to 500 people gathered around the country to protest and in Wellington a member of each political party addressed the crowd.