Editorial: SMA sufferer's fight for care

Natalie Edwards, pictured with grandmother Judy Lawrence, needs Spinraza to improve her quality of life.

EDITORIAL:

Today we have highlighted the plight of a young Kiwi expat in Australia looking to come home. But she has a degenerative disease alleviated by a new drug that Australia funds and New Zealand does not.

Natalie Edwards, 16, will need to come home to go to university because she would be charged overseas student fees to study in Australia where she has been, with her family, for six years.

She is in a terrible bind, denied affordable tertiary education on one side of the Tasman, denied affordable medicine she needs on the other.

New Zealanders cannot do much to change Australia's treatment of our expats but we can do something to change drug funding here.

Many marched to Parliament last week demanding access to new medicines not funded by Pharmac. More than 17,000 New Zealanders have signed petitions to Parliament.

MPs now have no less than eight petitions in front of them, asking for 26 treatments for six diseases. One petition is for the drug Spinraza that would slow, not cure, Edwards' spinal muscular atrophy.

It would be irresponsible to publicise these cases without addressing the other side of the coin. Health funds are finite, every dollar spent on one drug is a dollar that cannot be spent on others.

And newly developed drugs cost a fortune. Spinraza injections cost around $1 million in the first year alone.

Pharmac does well to ensure its fund provides medicines that offer the most benefit overall. It has deferred a decision on Spinraza pending the outcome of two clinical trials.

The Government is being asked to set up a second fund for giving New Zealanders early access to new and emerging drugs. Pharmac's board chairman, Steve Maharey, supports the idea.

But an early access fund would also be finite. Criteria would be needed.

We would still be faced with heart-rending appeals for drugs that missed the cut and we would continue to wonder why remedies funded for comparable countries are denied here. It may never seem fair.