Advocates hit out at Pharmac for likely ending blanket funding for kids cancer drugs, call for inquiry

Patient advocates say it's 'absolutely horrifying' Pharmac is likely to end blanket funding for children's cancer drugs after a woman accused the drug-buying agency of discrimination.

Fiona Tolich, who has Spinal Muscular Atrophy (SMA), has been trying to get Pharmac to fund a life-changing drug for youth with SMA, a severe, neurological condition that causes weakness and muscle wasting.

In her research, Tolich found a little-known loophole that allows children with cancer to get any drug their doctor thinks they need so she launched a case under the Human Rights Act claiming discrimination.

But instead of funding SMA drugs, Pharmac is now likely to end its blanket coverage for child cancer drugs, a decision the agency had been considering for some time.

Fiona Tolich was diagnosed with SMA at 30. Photo credit: RNZ
Fiona Tolich was diagnosed with SMA at 30. Photo credit: RNZ

In a statement on Monday, Patient Voice Aotearoa slammed news as "appalling", saying Pharmac's likely decision was a "knee-jerk reaction to being called out for blatant discrimination".

"This is an absolutely horrifying decision that has been made by Pharmac," chair Dr Malcolm Mulholland said.  

"Every New Zealander should be outraged by this act. The result of this decision could very well result in kids with cancer being deprived of access not only to new medications, but to existing medications that have been funded overseas for some time. The inevitable outcome of such a result is that New Zealand children with cancer are likely to die or die sooner." 

The organisation is now calling for Health Minister Andrew Little to immediately intervene and instigate a Royal Commission of Inquiry.

Tolich, who is also a Patient Voice Aotearoa trustee, said she never dreamed this would be the outcome of her trying to help children get life-saving drugs.

She said Kiwi kids with cancer should continue to receive the very best treatment options, but there should be equal help for children with other conditions.

"All children deserve equal consideration and yet, there's a whole primary school class worth of kids who are essentially being picked to die," she said.

"If a child with SMA can access treatment, then the likelihood of their lives being cut short diminishes drastically and in fact, many will go on and live a healthy and long life. It is unconscionable that rather than Pharmac addressing the inequity by funding available (and highly rated and prioritised by Pharmac's own technical team) medicines for children with SMA, they have taken the shocking preference of looking to curtail treatment options for children with cancer so that they cannot be accused of discrimination."

Patient Voice Aotearoa chair Malcolm Mulholland.
Patient Voice Aotearoa chair Malcolm Mulholland. Photo credit: The AM Show

The ACT Party has also condemned Pharmac for considering ending blanket funding of children's cancer drugs.

"Depriving children of cancer drugs shows exactly why we need a funding review into Pharmac," Health spokesperson Brooke van Velden said.

"A report this morning that Pharmac is likely to end blanket funding for kids' cancer drugs is incredibly alarming."

ACT health spokesperson Brooke van Velden.
ACT health spokesperson Brooke van Velden. Photo credit: Newshub Nation

She noted Pharmac needed over $400 million in extra funding, but funding was removed from the review into Pharmac.

"Funding new drugs costs more money, but as medicine technology improves we need to be asking whether Pharmac's funding model is fit for purpose... The Government needs to do the right thing and implement the full review."