Representatives of patient advocate organisations at the MyLiveMatters campaign launch. Photo: RNZ / Rayssa Almeida
The MyLifeMatters campaign says New Zealanders' ability to get new and breakthrough medicines lags behind other OECD countries.
The collective represents more than one million patients with cancers, rare disorders, diabetes, and other life-limiting conditions.
Patient Voice Aotearoa chairperson Malcolm Mulholland said New Zealanders were "one diagnosis away" from having to move to Australia to access medicines that are publicly funded elsewhere in the OECD.
"We are in a crisis and our politicians need to act," he said.
Mulholland said Pharmac needed urgent investment.
"In April 2023, there were 1092 applications waiting for funding on Pharmac's Options for Investment List, with many medicines languishing for an average wait time of 7.7 years and longer."
Representing Brain Tumour Support, Pauline was at the campaign launch in central Auckland on Monday morning.
"In 2018 I was diagnosed with a surprise tumour and after the surgery I found the first three months, which is the acute treatment, brilliant.
"However, after the three months you are left on your own."
She said although some medicine was funded for brain cancer, not all injuries were the same.
"Each brain tumour, each head injury is different ... they might have some similarities, but each one of us faces different cognitive challenges.
"Funding is so important to make sure we all have a better quality of life, mostly after acute treatment."
"They [Pharmac] talk and say 'hey, let's do another research assessment' and then [they] put it into a box. We need more action."
Crohn's and Colitis New Zealand chief executive Belinda Brown said Pharmac should keep up with new medicine options becoming available overseas.
"We've just had two new ones funded but they are now old technology, there's new medicine coming all the time.
"It's important to keep patients out of hospital and given medications so there's less burden on our health care system."
She said she would like to see Pharmac's budget doubled.
Brown questioned what Pharmac had done on the recommendations in the review last year and said she would like more accountability.
"We spent all this money as a government, what have they actually done with those recommendations?
"I think that if Pharmac was under the umbrella of the Ministry of Health someone might hold them accountable. If we don't have our health, what do we have?"
Prostate Cancer Foundation chief executive Peter Dickens said patients' quality of life was being affected by the lack of up-to-date funded medication.
"We are really worried about the medicine crises in New Zealand, particularly for prostate cancer patients. There hasn't been a new therapeutic treatment [for prostate cancer] funded in almost 10 years, while overseas, they are about two generations of medicine ahead of us."
Dickens said New Zealand was falling behind, and men were dying and having a worse quality of life as a result.
"It's very clear that the way we go about funding medicine is broken and what we need the political parties to do is to have a sit down and have a really good look at the Pharmac model and change it.
"Something has to change because people are dying as a result," Dickens said.
Pharmac response
In a statement, Pharmac chief executive Sarah Fitt said the agency released in March their final response to the review, identifying priority work areas.
"We underwent a thorough assessment of our own organisation structure following the review. This resulted in a new directorates for Māori, advice and assessment, and devices, and engagement and equity."
She said as the review strongly recommended having more of a consumer voice in decision making, Pharmac made consumer appointments to specialist advisory committees including PTAC.
"To help address the inequities in the health system experienced by Māori, we created specific Te Tiriti accountabilities for Pharmac's senior leadership team.
"We also brought in people with lived experience of illness to speak at advisory committee meetings and advocate for treatments on behalf of their community."
Fitt's statement said Pharmac was committed to making the decision-making processes faster, clearer, and simpler.
"Our most recent data shows that our efforts to improve our timeframes and the transparency of our decision-making are working.
"There are a lot of factors that affect our decisions that a simple list of medicines doesn't tell you - such as treatment suitability and availability, the process of negotiation with suppliers, financial constraints, and considering what would provide the best health outcomes for New Zealanders, which isn't always straightforward."
Pharmac spent every cent of its budget on new medicines and devices and its budget increase in 2022, the largest in its history, allowed it to fund more medicines, vaccines, devices and related products.
It would always welcome more funding to the Combined Pharmaceutical Budget and would be would be submitting a Budget Bid in 2024.
"However, we do not share the names of specific medicines we would like to fund as this would impact commercial negotiations. In addition, the priority of treatments can change at any given time," Fitt said in the statement.
"Any additional budget increases would be spent on treatments that would deliver the best health outcomes possible for New Zealanders," she said.
