The difficult decisions of rare disorder treatment

Stuff reports:

A Masterton woman who has flown almost 400,000 kilometres to get life-saving treatment for a rare disease is angry that New Zealand is now the only developed country that does not fund treatment for it.

Mother of three Allyson Lock has Pompe disease, a rare degenerative disorder that can be fatal if left untreated.

As of Tuesday, Australia has begun spending A$40 million ($43.8m) over the next five years on funding treatment for the disease – leaving New Zealand “dragging the chain”, Lock said.

“When you’re on treatment you can plan a life, you can plan things. But when you’re not, all you can plan is your funeral.”

A medication called Myozyme is available for Locke and 10 other known Kiwi Pompe sufferers, but it costs about $500,000 a year and is deemed too expensive by the government drug-buying agency,

Unless you believe money grows on trees, there is a limited health budget. On a compassionate level I think most of us want people with treatable disorders to get that treatment, and are happy to pay taxes for it.

However there obviously has to be some threshold at which the opportunity cost is too high – that the money you spend on one individual, means dozens of others don’t get their treatment funded.

I’m not sure what the threshold is. I’m glad Pharmac has to make those calls, not me. And it’s awful for those who can’t get their treatment funded.

But if 40 years of treatment will cost taxpayers $20 million, is that affordable? It is for one person, but then does that mean every treatment for every person must get funded? And what if the $20 million only expands life expectancy by five years?

As I say very hard decisions.

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