20 May 2022

Big Budget boost for Pharmac, but advocates call for more

From Checkpoint, 5:43 pm on 20 May 2022

Pharmac has been given its biggest ever Budget allowance - $191 million - but it still falls well short of what advocates wanted.


The drug buying agency would have needed around $400m to clear its wait list, which has about 130 applications.

Those with rare diseases are still fighting to even get a spot on the list.  

Chantelle Wedlake's two-year-old daughter Zoey has Spinal Muscular Atrophy and desperately needs the medication Spinraza to treat it.  

Yesterday's news was not what they were hoping for. 

"I felt sick and devastated to be honest, I just don't believe the price tag should be put on a persons life and there was so much funding put towards other things like scrapping cars and, you know, more superficial things like that, but that does not replace a life." 

Without the medication, Zoey will eventually end up in a wheel chair. 

But with a cost of around $300,000 a year it is out of reach. 

"Feels like we're kind of in limbo at the moment, not knowing what's going to happen day by day, not knowing when her condition could get worse you know, we don't know how much time we have." 

Lydia Peirera is paying $6000 a month for Qinlock to treat her terminal gastrointestinal stroma tumour. 

After many other failed treatments, it was the first that was working.

"When we initially talked about going on this treatment plan it was more just to give me a little bit more time because I am pretty much at the end of the road but what has actually happened is that it's not only just stopping the tumors from growing, it's reducing them as well," Peirera said.   

She was facing $36,000 in costs, which so far she had been funding through the generosity of others, but with the drug funded in Australia, she was now exploring that option. 

"I have a beautiful young family who I want to watch grow up, for me it is always going to be an option I just have to figure out a plan to get there and try and see how it could work." 

Donna Evans was the first person in the country to be diagnosed with Pompe disease - which causes extreme muscle weakness and breathing problems that can lead to respiratory failure. 

She needs the medication Myozyme, which she has to get funded through a global healthcare company. 

After years of campaigning to have it funded here she was tired. 

"I've sat at parliamentary tables I've sat at health select committee meetings in both governments, have sat at the Māori house select committee, I've sat at the Māori arm of Pharmac," Evans said. 

She has been medicated for the last five years, but said if she had access earlier her quality of life now would be drastically better.  

Only 11 other people have the condition in New Zealand, and Evans said rare diseases were at the bottom of Pharmac's list. 

"They've actually got to listen to people with rare diseases. Where will I see a difference in my life with part of that money? Are they going to fund the 12 of us? Honestly, probably not. "  

Pharmac chief executive Sarah Fitt insisted it would do all it could.

"Sometimes the advantage with medicines for rare diseases is that the numbers are quite small, so the actual impact on the budget is quite small. You know some medicines might be reasonably not that expensive, but there might be huge numbers of patients, so we have to take all those into account we're looking at across the board and a wide range of medicine," Fitt said.

Since yesterday's announcement Pharmac has issued three consultations. If successful, 15 new medications would become available from 1 July for conditions like cancer, multiple sclerosis and HIV.