Rare Disorder Patients Desperate To Know If Their Medicines Will Be Funded In New Pharmac Funding Allocation

Rare Disorders NZ welcomes the announcement that more funding has been allocated to Pharmac’s medicines purchasing budget but is deeply frustrated that there is a lack of clarity around what the additional 28 medicines to be funded will be.

On Monday afternoon the Government announced it will be boosting Pharmac’s budget by an additional $604 million over four years in an effort to get the cancer medicines promised by National pre-election funded.

“While we always welcome any increase to Pharmac’s medicines budget and we are thrilled for the clarity it brings to cancer patients who have been waiting for this news, rare disorder patients who are also waiting for medicines on the Options for Investment list are desperate to know if their medicines are included in the 28 ‘other medicines’ that the additional funding will cover,” says Chris Higgins, Chief Executive of Rare Disorders NZ.

“Pharmac are currently unable to provide any clarification, despite the Government announcement being quite clear about how many medicines the new funding will cover and how many people will benefit. At the very least rare patients deserve to know whether they should continue to hold out hope,” continues Higgins.

There are currently 13 medicines for rare disorders (excluding rare cancers) on Pharmac’s Options for Investment list. These medicines would be life-changing for the patients waiting for them.

“Patients waiting for medicines on the OFI list have long been told the only thing standing in the way of accessing their medicine is funding. They have been patiently waiting while becoming increasingly unwell and disabled and facing the prospect of avoidable early death. It is unbearable for them to potentially be so close to access yet be told to continue to wait with the possibility the result will not be in their favour,” says Higgins.

“New Zealand’s track record for investing in medicines is appalling, so this additional funding for Pharmac is fantastic and long overdue, but the whole process to get this far has been an absolute shambles. It has and continues to be incredibly insensitive to those dependent on these decisions. I hope the Government in future will think more carefully about how they make these announcements and the importance of clarity.”

New Zealand sits at the bottom of the OECD for access to modern medicines. Currently, OECD countries invest on average 1.4% of GDP on medicines. New Zealand invests only 0.4% of GDP.

“The best way forward in our view is for the Government to set itself on a funding trajectory which will see medicines available to New Zealanders at at least the OECD average, beginning with clearing the Options for Investment list,” says Higgins.

About Rare Disorders NZ

Rare Disorders NZ is the only national organisation supporting all New Zealanders who live with a rare condition, and the people who care for them. Rare Disorders NZ offers a central starting point for patients and families affected by rare disorders, and helps families, patients and healthcare providers find essential information and support groups.

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