Deborah Coddington: Drug 'madness' puts lives at risk

Ken is a 40-year-old father of two children aged 5 and 7 who's been diagnosed with a particularly nasty form of cancer. In order to save his life, he's had his testicles and penis removed. He's now facing massive chemotherapy, but Ken says he'll do it because he wants to be around for his children when they're 15 and 17.

I just made that up. I don't even know if there is such a cancer, but I bet male readers have already crossed their legs. Hold that thought for a minute, guys, and imagine how you'd feel if you were told that while the state will fund the surgery, you still have to pay around $130,000 for drugs to dramatically reduce the chances of your cancer returning. Pretty mad?

Would you feel even more mad if you found the Government will fund the drug only if you wait until the cancer has spread to your brain, liver, or other organs, and you have no hope of surviving?

There can be few tasks more frustrating for a journalist than writing stories about madness.

A few weeks ago I was assigned to interview Kendall Hutchings, who, late last year, at the age of 40, was told she had a particularly vicious type of breast cancer (HER2). The treatment was harsh - both breasts amputated and a three-stage course of chemotherapy to try to stop the cancer spreading to her other organs.

How women cope with the trauma of mastectomy is beyond my comprehension. We moan about our boobs - too big, too small, ogled at by perverts, giggled about by schoolboys - but one day a doctor sits you down and says you must choose, your life or your breasts. There's no competition.

But a bilateral (or double) mastectomy isn't enough to stop HER2 cancer spreading.

Women such as Kendall - and there are hundreds throughout the country - with HER2 must undergo three courses of chemotherapy. The first is paid for by Pharmac. The second and third stages, using Taxotere and Herceptin, are not. Well, not unless the cancer has already spread to other organs and the patient has no hope of surviving. Despite four trials involving 13,000 women, Medsafe - the Ministry of Health's medicines regulator - has delayed licensing Herceptin because of concerns about "safety issues".

But if you can afford to pay privately for Herceptin - and many New Zealand women are desperately trying to raise the money to do this - the drug is considered safe.

It's also safe if you're at death's door. Crazy.

As is the bureaucratic nightmare of Pharmac, our state drug-funding agency. Beneath the Pharmac Board is the Pharmac Advisory Board, made up of one paediatrician, one psychiatrist, three general practitioners, three physicians and two pharmacologists. This board meets once every three months.

Then there are 13 expert subcommittees which provide "clinical evaluations in specialist areas", for example, diabetes, cancer, mental health, cardiovascular. Each committee has several specialist members who meet "as needed".

The committee representing consumers meets just twice a year, is chaired by Sandra Coney of Women's Health Action, and has eight members, five of whom are specialists in Maori or Pacific health.

Finally there's a new hospital pharmaceuticals advisory committee, responsible for managing hospitals' drug expenditure, whose eight members and chairman "meet on a regular basis".

But this expensive cast of thousands doesn't ensure drug-funding decisions are rapid or correct. In December Pharmac rapidly u-turned on the prostate drug Lucrin because it didn't get advice from the cancer committee. Diabetes drug Lantus applied for funding in 2004 and still no decision has been made. As National MP Dr Jackie Blue said, if this is Pharmac's definition of "quick", the agency urgently needs reviewing.

Next week Medsafe decides if Herceptin can safely be used by women in the early stages of HER2 breast cancer (which includes those who've had mastectomies and whose prognosis is already grim).

But given Pharmac's lumbering pace, there's not a lot of hope for women like Kendall Hutchings, or Anne Hayden, the Devonport woman who initiated the 17,000-signature petition presented to Parliament on Thursday.

Too many young women in New Zealand are having their breasts surgically removed in an effort to save their lives. If men's sexuality was being amputated at anything like the same rate, I doubt there would be the same lack of logic and delay over drug funding as there has been with Herceptin.

- HERALD ON SUNDAY