Kerre McIvor: Drug spend a hard pill to swallow

Not every parent can expect funding for their child's lifesaving medication. Photo / Getty Images

If my child was dying of a disease and there was a drug that could help her live longer and it wasn't a drug funded by the government, you bet your bottom dollar I'd be out there fighting to get that drug on the Pharmac list.

I'd be organising petitions, lobbying parliamentarians and doing all I could to get my child's drug funded.

That's what parents are supposed to do for their kids. Fight for them.

And to hell with all the theoretical niceties, such as those arguments that say we have a limited amount of money therefore Pharmac must make funding decisions based on the cost-effectiveness of the drugs; the arguments that say if we fund this drug for your child, we cannot fund that drug for my husband; the arguments that say there are other lifesaving drugs, with better clinical trial results, ahead of your chosen drug on the Pharmac schedule.

Those arguments wouldn't mean a thing if a family member or a close friend was suffering.

So I can understand why people with melanoma and those who love them are lobbying so intensively to get Keytruda (pembrolizumab) on the taxpayer-funded drugs list. Keytruda has been labelled a wonder drug by those who have responded well to it, but Pharmac says it fails on the cost-effectiveness scale: the clinical results aren't definitive and the drug is too expensive.

I would hate to be one of the decision-makers at Pharmac. It's basically playing God with people's lives. Put a drug on the list, and a life is saved. Keep it off the list, and people must resort to sausage sizzles and Give a Little fundraising.

What a hell of a decision to make. I imagine that there'd be a high churn in personnel in Pharmac's decision-making department.

But thank heavens they are there. Because if I was in charge, the budget would be blown in weeks. Who could fail to be moved by many of the stories from people will only see their children grow up if Pharmac agrees to fund their drug of choice?

Health Minister Jonathan Coleman, who received an 11,000 signature petition this week calling on the Government to increase funding to Pharmac so it can buy melanoma drugs, says he's sympathetic but his hands are tied. He has reiterated that Pharmac decides which drugs to fund.

That is utter hogwash, given National's decision to over-ride Pharmac and demand that Herceptin (trastuzumab), a breast-cancer drug, be extended to sufferers from nine weeks to a year as part of an election promise.

Coleman now says that was a mistake, but who can blame lobby groups for thinking if they make enough noise, and if there are enough votes in it, Government can be persuaded to interfere?

The taxpayer, through Pharmac, already funds more than 19,000 drugs and medical devices and I have no doubt Pharmac could easily make 19,000 more available if the country could afford it.

But I do agree with Dr Chris Jackson, who argued Pharmac could be doing a much better job of explaining its decisions.

He called for a "drug scorecard" using a validated scale like the European Society of Medical Oncology's Magnitude of Clinical Benefit scale.

That, Jackson argued, would give more transparency and lead to a greater sense of fairness.

He also suggested clear goalposts for funding - such as a set cost-effectiveness point and agreed timeframes for assessing funding applications.

All very sound suggestions.

It's not meanness or wilful cruelty that's precluding Pharmac from putting life-saving drugs on the government-funded list. It's brutal economics. And staying alive when your drug isn't funded by Pharmac is even more brutal.

People who have the money, or who have friends who have money, have the opportunity to stay alive longer than people are on the bones of their bum. And that's a hard pill for Kiwis to swallow.

Parents of children, friends, husbands and wives are doing their job by fighting for their loved ones. But Pharmac's doing its job too.