Patients with rare disorders encouraged to leave NZ to live

These images were taken last week at Rotorua Hospital of three-year old Tama. Tama has a degenerative disease called Spinal Muscular Atrophy (SMA). There is a treatment called Spinraza that is revolutionary and is designed to stop the disease in its tracks. The drug is funded in over fifty countries but not in New Zealand. Sadly, if Tama does not receive it, he will die.

States Tama’s mother, Lisa Geddes, “Until Pharmac is reformed to cater for sufferers of rare disorders, children like my son Tama, will suffer. He does not deserve this suffering and it feels like it is going unnoticed. Why won’t they help him? His life is not worth saving here according to the decision-makers and I am powerless. I’m just broken, watching my son deteriorate, when I know there is something that can stop this. I should be celebrating new milestones, not watching him being attached to breathing support, as this disease continues to cruelly weaken him. I am heartbroken.”

Trustee of Patient Voice Aotearoa and fellow SMA sufferer, Fiona Tolich, comments that getting medicines such as Spinraza funded under the Pharmac process is near impossible. “Last week Pharmac presented to the Health Select Committee. It was demoralising to hear that Pharmac, contrary to what the Minister of Health had told the same Committee earlier in the year, no longer has a ring-fenced fund for rare disorders and that all applications to fund drugs that treat such disorders will be part of the bigger pool that is assessed by Pharmac. What that means is that, as is the case now, no drug that addresses a rare disorder will be funded as it will fail to meet the criteria to cater for a significant portion of the population.”

When asked what families should do if they have a member with a rare disorder, Tolich is under no illusions. “I would encourage people with rare disorders, much like those with SMA, to now make plans to shift to a country that has a much better drug funding regime and that values life. It breaks my heart that children, such as Tama, are dying because this Government refuses to accept that the Pharmac model is broken and is not funded to a level that would allow it to do its job properly and save lives. Instead, we continue to feel insulted when we are constantly told that Pharmac is “The envy of the world”. I can’t think of one Government that would label its drug funding agency as being ‘The envy of the world’, when it allows children to die unnecessarily.”

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