A $200 million Budget cash injection for Pharmac, far less than what advocates were calling for, has left two Hastings families in dire need of costly medicines "heartbroken".
On May 12, close to 30 people gathered in Hastings for the national Lie Down for Life protest.
It was attended largely by the families of children with Spinal Muscular Atrophy – a condition that destroys motor neurons which can be improved by life-changing drug Spinraza, which is funded in Australia, but not New Zealand.
A 100,000-signature petition by Patient Voice Aotearoa calling to double Pharmac's $1 billion funding in this budget, with a view to triple it in two years, was presented to Parliament before the Budget.
But the $200m announcement has fallen far short of what protesters say is needed and Patient Voice Aotearoa trustee Fiona Tolich said it was "signing the death warrant" for families with SMA.
Pharmac chief executive Sarah Fitt said the budget increase is welcomed and while they will be able to fund more medicines with the increase, not all on the Options for Investment list are expected to be funded.
She said on a fixed budget, "there will always be more medicines than we can afford to fund", meaning they have to make "some difficult choices".
Spinraza is on the Options for Investment list but Pharmac has determined that it will focus on progressing medicine funding options that are "ranked higher than Spinraza".
Hastings mum Stacey Reading, whose nine-year-old boy Liam has SMA type II said the Budget "broke my heart".
Watching the budget announcement with her mother, who is worried she will see Liam die in her lifetime, they "just cried", Reading said.
"We're all extremely gutted and angry because they say they care about all New Zealanders, they want the best for all New Zealanders, they throw these words around but they don't actually know the true meaning behind them."
She says Liam struggles mentally, not understanding why he can't get treatment.
"He's got all these dreams and I want them all to come true but we really don't know how much longer he's got; it just breaks my heart."
Hastings mother Rachel Shaw, who has a son with SMA II and a daughter with SMA III, said it is "another nail in the coffin for us".
"They're saying they understand where we're coming from and that they're sympathetic towards us but there's no change ... they're not putting their money where their mouth is, basically it's all talk and no show."
Tolich said "other than getting nothing it was one of the worst outcomes that could have eventuated".
The $200m over four years "barely keeps up with inflation and population growth".
In April, Pharmac's Options for Investment list, released under the Official Information Act, showed there are 73 medicines the agency determined should be funded, but for which there is no budget.
This would cost $417 million.
Tolich said she doesn't believe the funding will have any difference to Spinraza as "how [Pharmac] prioritise medicines is for the cheapest drug for the most number of people".
"When you're only getting a small amount of money, you're not going to pick something that isn't going to impact a lot of people, and this is the problem we've got, we just look at things completely wrong.
"It's not just SMA, anybody in New Zealand should be scared right now because you're only a diagnosis away from being in the same position as what this SMA community is in - people should be afraid of that.
"Scott Base [a $300m investment] got more than Pharmac ... I don't want to begrudge them for getting that, that's fine, but we're talking about lives and lives of children."
Fitt said Spinraza supplier Biogen has been notified of Pharmac's approach, and it remains an option for investment.
In December 2020 a funding application for another SMA medicine - risdiplam - was received and Medsafe is currently assessing it for marketing approval.
Fitt said clinical experts on the rare disorders and neurological subcommittees have recommended that risdiplam be funded for people with SMA type 1 – the most severe of the three types.
Risdiplam will next undertake an economic assessment, comparing funding of the treatment against all other medicines proposed for funding.
Fitt said people say Pharmac only funds low-cost medicines that treat large numbers of people, but of the 3.74 million people that receive funded medicines, in 2020, 84 per cent of the budget was spend on 10 per cent of people on "expensive" medicines that treat conditions such as cancer, hepatitis C and autoimmune conditions.
"Often, when talking about an unfunded medicine, people assume that Pharmac has decided not to fund it.
"But that's not true; most of the time what is happening is that Pharmac is focusing its attention (and available funding) on other new medicines.
"We'll always have medicines that we'd want to fund when and if we have more money available.
"We understand and appreciate that SMA has a significant and distressing impact on those who have it and their whānau."
Health Minister Andrew Little said the $400-million a year figure was based on the international price of drugs, not what Pharmac would negotiate.
"Labour made a commitment at the last election to increasing Pharmac's funding by $200m over four years. We are doing that.
"When we came into Government, Pharmac's budget was barely keeping up with inflation. Since then we've increased it by 25-percent, to more than a $1 billion a year – the highest it's ever been. That's a real increase that's making medicines affordable.
"Pharmac's job is to make the best procurement decisions within its budget and this is by no means an easy task. It negotiates with pharmaceutical companies to make sure we have the widest possible range of treatments for New Zealanders, and it is constantly striving to ensure that the way it spends this budget provides the maximum support to the maximum number of New Zealanders."