So, patients’ rights advocates are taking a stand– by lying down.
“Lie Down for Life” is a nationwide day of action, petitioning the Government to increase Pharmac funding.
Advocates say over the years successive governments have continued to severely underfund the entity, making Pharmac one of the most poorly-funded drug buying agencies in the OECD.
Kiwis living with cancer, rare disorders, or chronic illnesses are missing out on lifesaving treatment.
Vicky Devine is the Ōtautahi organiser, and for her, the movement sits close to home.
Her daughter was born with a rare condition and relies on Government-funded medicine.
She said many people were forced to crowdfund or move overseas to access lifesaving treatment.
“It’s life or death for a lot of people.”
A devastating situation Bella Powell, 17, knows all too well.
She was told at age 15 she had just two years to live if her disease, cystic fibrosis, went untreated.
However, thanks to a “miracle” drug called Trikafta, she beat the odds. But the lifesaving drug came at a cost - $469,000 a year.
Powell has since been calling on the Government to subsidise the medicine, so the 500 Kiwis with Cystic Fibrosis could access it, without paying the hefty price tag.
“It gives me so much hope that there is room for change in New Zealand. I love New Zealand; I love to live here. But it seems as though my Government doesn’t value my life and our lives as sick Kiwis.”
Today, participators lay down in Cathedral Square at 12.30pm, coinciding with the presentation of a 100,000 strong petition to Parliament.
Despite the rain, patients, advocates, and supporters rallied together and lay down on the job.
Those who could not lie brought chairs and held banners in support.
Devine signed off the local event with a Karakia for those who lost their lives due to a lack of treatment.
Eleven cities across New Zealand joined the movement, from Whangarei to Dunedin.
Powell said there was power in voices.
“We can’t stay silent. We can’t lose hope.”
Patient Voice Aotearoa led the call to action.
National co-ordinator Malcolm Mullholland said they simply wanted the Government to listen and take a reform of the agency seriously.
He emphasised the protest was not an attack of Pharmac, which played a vital role in New Zealand healthcare.
Instead, action needed to stem from the Government.
The petition, launched in early 2020, calls on the Government to double, then triple Pharmac's $1 billion budget, to bring New Zealand into line with the drug spends of other developed countries.
In March, the Government announced a review into Pharmac, focusing on its performance and potential to improve health outcomes for all New Zealanders.
Health minister Andrew Little said it was about making a good system better.
“It is vitally important that the public have trust and confidence in the Pharmac model, including the way it considers new medicines, identifies and addresses safety concerns and the way it makes its decisions.”
But for Powell and other Kiwis like her, time is of the essence.
“There is no plan B. This is the only way forward for me, and without this, I will die. I know that.”
For now, patients and advocates alike will lie in wait for the Government to respond.
You can sign the petition here.