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Battle for life-saving drugs now harder as Pharmac absorbs $5m rare disorders fund - critics

A $5 million fund set up by Pharmac in 2014 to adress rare disorders no longer exists, angering advocates who say the battle to get life-saving drugs funded is starting to get even harder.

The difficulty of getting drugs has even driven some Kiwis to move across to Australia, where they are funded. Kirsty Yeoman moved from Auckland to Australia with her three-year-old daughter, Charlotte, who has spinal muscular atrophy (SMA), in order to access life-saving drug Spinraza.

Rare Disorders New Zealand chief executive Lisa Foster explained that the $5 million fund allocated for rare disorders has instead been swallowed into Pharmac's combined pharmaceutical budget.

"Out of that $5 million over three years, only $700,000 per year was actually spent, and yes, now there is no fund that is specifically allocated,” Ms Foster told TVNZ1’s Breakfast this morning. “It’s become quite a complicated and confusing system.

"I think there’s a lack of equity in the fact that this structure of Pharmac is not able to basically work alongside the cost of expensive, innovative drugs, modern drugs, so all people with rare disorders and cancers are going to lose out with this system unless there’s an alternative pathway.”

Ms Foster said she believes New Zealanders will continue to move overseas to access life-saving drugs “unless there’s a change”.

“For us to be equitable, there’s no way that expensive drugs for small population numbers are ever going to get fair hearing. That can’t have an equitable system unless there’s an alternative pathway, which is not judged on cost, and there has to be other factors for consideration.

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Rare Disorders New Zealand's Lisa Foster joined Breakfast to discuss the loss of the earmarked fund. Source: Breakfast

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Kirstie Yeoman and her children moved to Australia for access to a lifesaving drug not approved by Pharmac for funding in New Zealand. Source: Breakfast

"Although Pharmac do add that into the equation, cost overrides all of those factors for consideration. There is basically a trade-off against more medicines for more people at a cheaper cost, so we’ll never have equity unless we have these alternative choices.”

More than 7000 rare disorders collectively affect around 200,000 New Zealanders.

Accessing the drugs are “enormous” and “the difference between life and death”, she said, adding that they are “pretty much up there with anybody’s hopes and dreams for extension of life, quality of life”.

“I think that there is always evidence-based decisions that must be made, clinical decisions, and obviously, new drugs, new medicines. They take some time to develop, some of those clinical trial data."

She said while clinical decisions and gathering clinical trial data takes time to develop, "having a pathway that allows access a little earlier or with less stringent criteria is definitely something that should be looked at".

Ms Foster said while the issue has been raised with Pharmac and they are understanding of the concerns around equity, there is a "shared understanding that there is some change required for equity to occur".

She added, however, that the return of the fund “is not really going far enough".

“I think the fund didn’t work; there were eight medicines funded over three years; there was confusion about how many patients gained access to those medicines. I’ve been waiting for those answers from Pharmac, and I think really, it needs a bigger change than that.

“It needs an actual equity lens and an alternative pathway.”