Women with advanced breast cancer have issued a challenge to politicians to help them access drugs that could prolong their lives.
Labour MP Louisa Wall, who chairs Parliament's health select committee said everyone who was present when the 10 women who appeared before it yesterday would have heard their plea for funding for the two drugs.
"I think what they shared with us were real life experiences of being diagnosed with conditions that are treatable. From their perspective they want to access those pharmaceuticals because they want to live," Wall said.
"I heard it. I think everyone in that room heard it. They have children, they have husbands, they have families. It really was a challenge, a wero, to the current regime that is denying them what they say is world's best practice pharmaceuticals."
The women, from all over the country, all walks of life, all with advanced breast cancer, were at Parliament to try to persuade MPs to push for the Government drug-buying agency Pharmac to fully fund Kadcyla and Palbociclib (also known as Ibrance).
The committee is currently considering a petition signed by close to 34,000 people on the issue.
Wiki Mulholland, who appeared accompanied by her husband Malcolm, told the committee that since the petition was delivered to Parliament in October last year, 78 women from their support groups had died.
Mulholland said Ibrance had been hailed as a "game-changer" around the world which could be used for first and second line treatment.
"The more treatments we have, the longer we live," she said.
"We're not asking for a medical decision, we're asking for leadership on this issue and you to prioritise our right to live by calling an urgent inquiry into Pharmac so that hopefully there can be change to an outdated system."
Mulholland questioned why women had to go to Malaysia or move to Australia or the UK to access cheaper life-extending drugs.
"Why do we have to sell our homes or cash in our KiwiSaver to fund medication?"
There were more than 1000 Givealittle pages fundraising for women with advanced breast cancer to pay for the $5800 per month unfunded cost of the drugs, she said.
Auckland academic Hilary Chung told the committee she should be dead because by the time her aggressive cancer was detected, it was throughout her body.
"But I am very much alive. I'm a senior academic at Auckland University, I have a PhD, I speak six languages.
"This would all be impossible if I had to rely on Pharmac," she said.
She had crowdfunded her Ibrance.
"Being told that the drug I need to prolong my life is unfunded and that I have, myself, to find $66,000 is devastating. It's a punch in the stomach," Chung told the committee.
Wall told the women Pharmac could be asked to come back and provide more information when the committee considered the petition.
Breast Cancer Foundation research manager Adele Gautier said it was a "crying shame" the drugs were not funded in New Zealand.
"We're talking about two drugs that have become the standard of care for advanced breast cancer in other countries that we like to compare ourselves with so for Pharmac to say that the evidence isn't there is just not good enough for these women," Gautier said.
"Does Pharmac know better than Britain's NHS, than Australia's PBS? It just doesn't make sense."
Asked for comment, Health Minister David Clark acknowledged the courage and determination of the women and their families for advocating on their own behalf and others suffering from advanced breast cancer.
"I know the health committee will have listened carefully to their stories and I acknowledge its independence, including its freedom to seek any additional information it feels it requires from Pharmac," he said in a statement.
Pharmac chief executive Sarah Fitt said the agency understood people wanted the newest medicines in the hope they would provide the best possible health result, but Ibrance and Kadcyla were just two of many medicines Pharmac was considering for funding at the moment.
"We have a fixed budget, which means we have to make careful and considered choices about which medicines will deliver the best health outcomes for New Zealanders.
"While some medicines may be available in other countries, the funding and reimbursement systems are often not comparable. New Zealand must make its own decisions, carefully assessing the available evidence and thinking about medicines use in the New Zealand health context."
She said many new medicines were launched without clear evidence that they worked as pharmaceutical companies claimed.
"These treatments can look promising, but we need to be absolutely sure they do what they say on the tin, and that we spend public money wisely," Fitt said.