New Zealand’s drug-buying agency doesn’t value the lives of all people equally, according to those advocating for the funding of medicines for people with rare illnesses.
Fiona Tolich keeps a notebook of the names of Kiwi kids with spinal muscular atrophy, a rare disorder that causes weakness and muscle wasting . The most severe type of SMA has a 95 per cent death rate for children who get it early. Without treatment, many die before they turn two from respiratory failure.
Tolich, who has a milder form of SMA herself, had been advocating for years on behalf of families for Pharmac to fund Spinraza, a life-changing drug for kids with the illness. The drug is fully funded in Australia, but would cost upwards of $135,000 per dose in New Zealand.
“Meeting families whose loved ones, their little babies, weren’t so lucky, knowing that there was a treatment out there that could change their future, I couldn’t as a mum not advocate for their life.”
She was in touch with one mum whose son, who has SMA, was put in palliative care in New Zealand over fears he wouldn’t survive. So, his mum took him to Australia for Spinraza, and he’s now thriving at school.
Tolich said that experience led to the mother saying: “Pharmac’s refusal to acknowledge and fix the gaping hole in the health system to support rare disease is cruel.
“Pharmac is no better than Hitler, which I know is harsh to say, but we didn’t fit into Pharmac’s box, so we were sent to the death chamber.”
Tolich said that was the reality for many people with rare diseases because Pharmac, which buys drugs in bulk to bring its prices down, meant the “system doesn’t cater for them”.
Ten-year-old Ryker Tolich wants to see medicine Spinraza funded for his mum.
She’s hoping to pass on that message today at a hearing of the Pharmac independent review panel . The panel was convened earlier this year to assess how well the agency performs against its current objectives and whether and how its performance could be improved.
But, the review won’t specifically look into Pharmac’s funding.
Tolich said this was disappointing because many of the drug-buying agency’s issues stemmed from funding.
“In New Zealand, lives are just not valued. So, drugs aren’t funded because they’re not seen to be bringing enough.
“They [Pharmac] look at, purely, what is the cost, and how much money do we have? It’s not just good enough," she said.
Tolich will be joined at the hearing today by Malcolm Mulholland, chair of Patient Voice Aotearoa.
Mulholland said the review was really overdue.
“Let them hear the voices of the people that Pharmac is supposed to serve but have let down.”
He hoped the review will result in Pharmac becoming more transparent and having an increased budget.
Last year, nearly four million New Zealanders received funded medicines that have been through the decisions of Pharmac.
There were 14 new medicines funded last year, including six cancer drugs, and 32 medicines had their access broadened due to Pharmac decisions.
Budget 2021 allocated an additional $200 million for Pharmac.
Speaking about Pharmac on Breakfast last month, Finance Minister Grant Robertson said the Government was already spending about $1 billion a year on buying drugs .
He said since Labour came into power in 2017, Pharmac’s overall funding had increased by 25 per cent.
“Pharmac is a bulk drug-buying agency. One of the issues that we’ve got to look at as part of the review is what do we do where we’ve got a smaller group of New Zealanders who may be able to benefit from a drug that is new to the market or that only works for a small number of people?” Robertson said.
Also last month, Pharmac’s director of operations Lisa Williams said the agency was “not just about the money — we're about the people” .
The agency's director of operations Lisa Williams says the agency is working to be more open and transparent.
“I think in that situation [Spinraza] we can't take the money out of it. ... When we're talking about extremely expensive drugs and we're having to make a choice between that medicine or another medicine, we need to make sure that we're making the right decision."
However, Williams refused to share the cost of funding Spinraza through Pharmac, only saying that it was “extremely expensive”.
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