Malcolm Mulholland has emerged as one of New Zealand's most outspoken and fiercest critics of PHARMAC.
Speaking to PharmaDispatch after leading yesterday's protest outside the country's parliament in Wellington, Mr Mulholland said he never saw himself in the role of patient advocate.
His path to patient advocacy followed a shock breast cancer diagnosis for his wife, Wiki, who accesses Pfizer's IBRANCE (palbociclib) privately.
"I think we both set out to find out why the medicine was not funded and that opened a big can of worms," he said.
"I was unaware of the situation in New Zealand with PHARMAC and I think most people are unaware of where we stand globally. I was in shock that we have a third-world system when it comes to medicines.
"We always thought, and have been told, New Zealand has one of the best health systems in the world. We don't - and the thin veneer of PHARMAC being the envy of the world is being whittled away."
The Mulholland's created a petition that collected thousands of signatures calling on the government to urge PHARMAC to fund Roche's KADCYLA (trastuzumab emtansine) and Pfizer's IBRANCE (palbociclib).
The petition was considered by a health select committee. Government members of the committee blocked a move by the opposition for a full inquiry into PHARMAC despite Prime Minister Jacinda Ardern acknowledging there was 'work to be done' on PHARMAC and accelerating access to new medicines.
The scrutiny of PHARMAC and related media have led to further stories of patients being denied access, including a family travelling to Australia so their two young children can access Biogen's SPINRAZA for spinal muscular atrophy through the PBS.
"This is not an isolated story," said Mr Mulholland, who said more stories were emerging of people moving to Australia to access medicines.
He described yesterday protest as a "really big and emotional day".
"We are gaining traction from where we started. The politicians are moving and they are definitely focused on an early access scheme."
However, Mr Mulholland said the government must commit to double funding for PHARMAC in the upcoming budget.
"We need to double funding. That is $1billion, which is a lot, but if we don't act now it will be billions and billions as we fall further behind. They need to get a move one, and not just for current patients, but future generations."