KEY POINTS:
I can't count the number of times I've been asked to speak at fundraisers for women with breast cancer. That's not surprising really, given breast cancer is the leading cause of death for New Zealand women.
Ministry of Health figures from six years ago put the number of women diagnosed with breast cancer at 2500 a year. Many survive, but on average more than 10 Kiwi women die every week as a result of the disease. And the number of young women being diagnosed seems to be rising.
Two fundraisers I spoke at were for young mums who'd discovered lumps while breastfeeding and, despite the best of care, they didn't make it, leaving grieving husbands and children to grow up without their mothers.
There's a lot of good things about being a woman. Among them is the way women rally round to help one another. They're good at fighting causes, although I wonder how many intelligent, articulate women will be lost to the voluntary work sphere as more of us hop on to the paid employment treadmill.
It takes energy to take up a cause; energy and time. But when we're diagnosed with a potentially fatal disease, it's amazing how much time we can find.
Down the years, women's health lobbies have been very effective in obtaining a generous slice of the health funding pie.
Led by pioneers Phillida Bunkle and Sandra Coney, they agitated for screening programmes for breast and cervical cancer; they demanded that women be able to take an active role in decision making when it came to their treatment; and they organised fundraising on a private level to help fund the research and treatment of many diseases, primarily breast cancer.
So when Pharmac refused to fund a 12-month course of a drug that fights a specific, aggressive type of early breast cancer, women didn't take the decision lying down.
After a couple of years of submissions, petitions and rallies failed to sway Pharmac, the so-called Herceptin Heroines took Pharmac to court. The High Court told Pharmac to review its decision. Pharmac did that and its decision stands.
It says there is absolutely no conclusive evidence that a 12-month course of Herceptin would be any more beneficial for women than the nine-week course, in conjunction with other treatment that is already funded.
It says that evidence for the drug in early breast cancer has only been available since 2006, so it's impossible to come up with hard data about its benefits and risks in the long term.
It also says Herceptin is not the wonder drug some claim it to be. On the studies available, just one to 13 out of every 100 people will have an improved, disease-free survival compared with those who did not take the drug, measured over two to three years.
Clinicians and HER2 breast cancer sufferers say 33 countries fund 12-month courses and want to know why Pharmac knows better than the medical experts in those countries.
And while Pharmac refuses to budge, men and women sell their homes, mortgage their properties, raid their retirement savings and sizzle sausages to pay the $80,000 for the treatment themselves.
There may only be the slimmest of chances that a 12-month course improves your odds but that's a chance some sufferers and their families are willing to take. Pharmac isn't. But then I guess a government agency shouldn't be in the betting game.
