Cystic Fibrosis NZ is taking a stand alongside patients and patient advocates representing rare disorders and cancers, demanding immediate action to address the leadership and culture of Pharmac, New Zealand's pharmaceutical funding agency.

"Our campaign to fund Trikafta, a CF treatment, demonstrated Pharmac's neglect of patient focus with the process highlighting a lack of trust, transparency, and respect for the role of patient advocates. Pharmac's processes and engagement with patients and patient advocates need an overhaul," says CFNZ chief executive Lisa Burns.

CFNZ fully supports the recent media statement from Patient Voice Aotearoa and Malcolm Mulholland, emphasising the need for change.

“Pharmac holds the lives of thousands of Kiwis in its hands and, as patient advocates, it is our role to provide a strong voice for patients and families who deserve better,” says Lisa.

A Kiwi living with cystic fibrosis who is still waiting for an extension to a modern medicine that Pharmac already funds, explains how the current process has left her feeling frustrated and disheartened.

“I applied for expanded access to Kalydeco through Pharmac in August 2021. Despite all available evidence, assessments, and reassessments, validation by their Clinical Experts, we’re going around in circles with unnecessary delays due to poor process and decision-making.

“New Zealand's restrictions on Kalydeco continue to leave me feeling disappointed. With each passing day, the sense of time slipping away becomes more pronounced as I invest considerable effort in preserving my limited lung function.

“The agonising reality is that I've endured a painstaking two-year wait, compounded by the fact that my lack of one of the most common mutations renders me ineligible for the majority of clinical trials, leaving me with no alternative options.”

Lisa says the failure to take immediate action in addressing the findings from the Pharmac Review makes it clear there is a need for urgent and fundamental change.

“The current system is not equitable or transparent and is not delivering good outcomes for the thousands of Kiwis who rely on it to have the medicines they need funded.”

Pharmac's performance falls far short of meeting the needs of New Zealanders, says Lisa.

“We urge all those in need of modern treatments to join us in demanding significant reform.”