Women with advanced breast cancer ask health select committee for Pharmac review

Ten women today spoke one after the other, telling a committee of MPs how desperately they did not want to die of breast cancer.

The women, from all over the country and all walks of life, came together at Parliament to try to persuade parliamentarians to push for Pharmac to fund two drugs they say will prolong the lives of breast-cancer sufferers.

They are also pushing for a review of the Government drug-buying agency, calling it outdated.

The health select committee is hearing submissions on a petition signed by close to 34,000 people calling for Health Minister David Clark and Pharmac to fund Kadcyla and Palbociclib (also known as Ibrance) for breast-cancer sufferers.

Wiki Mulholland, who appeared accompanied by her husband Malcolm, told the committee that since Christmas, eight women in their Metavivors support group had died.

Since the petition was delivered to Parliament in October last year, 78 women from Metavivors and Sweet Louise, another support group, 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to prioritise our right to live by calling an urgent inquiry into Pharmac so that hopefully there can be change to an outdated system."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 ought to be dead by now 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 and her combination cancer treatment of that and hormone treatment, according to the international medical consensus, was the best way to prolong her life.

She said that made a mockery of Pharmac's current position that it was considering funding Ibrance but only for those who had not had hormone treatments.

"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.

Committee chairwoman Louisa Wall said the committee had the sole responsibility for reviewing the performance of Pharmac, and it always got a good grade.

But if it was performing at a lower standard than it appeared, "that, from our perspective, is something that we have to take incredibly seriously", Wall said.

"If our oversight has been that this entity is operating very, very well, what you've presented today is with a different scenario and it will cause us to … ask Pharmac to come back and to provide us some further information in the context of the petition."

Malcolm Mulholland wrote to both the Health Select Committee and the Māori Affairs select committee calling for inquiries because he says Māori are disproportionately affected by Pharmac's funding decisions.

The Māori Affairs committee has already announced it will hold an inquiry into the health system and its effects on Māori.

Asked for comment, Health Minister David Clark said he acknowledged the courage and determination of the women and their families to advocate on their own behalf and for 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 patients, their families and whānau 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. Our fixed budget gives our health system certainty over the investments, and costs, of medicines," Fitt said in a statement.

She also said that 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."