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Lysosomal sufferer - Source: Close Up -
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Pharmac has approved an expensive drug for a young boy with a rare disease and says the door is open on funding it for a woman with the same condition.
Lysosomal Disease causes muscles and organs to fail and eventually leads to death.
The drug bill for treating it is half a million dollars a year, and while the drug myozyme is automatically available in most developed countries, funding for it is refused in most cases in New Zealand.
Kirsty Peacock, whose son Jack has the disease, told TV ONE's Close Up he had a one-off payment for the drug which he has been on for nearly two years and it has improved his breathing.
But the money ran out last year and he was getting his infusions with the drug for free for a limited time, until late June.
Only this week has she had news from Pharmac, the government's drug buying agency, that Jack can still have the drug, which she says is keeping him alive.
"They have approved it and Jack is now going to be getting the full dose of medicine for as long as we want it," she said.
Allyson Locke also has Lysosomal Disease but can't get treatment.
"Is it right just to say to me 'we're going to let you die?' That's not right at all," she told Close Up.
Locke believes if she doesn't get treatment, her sons will lose their mother.
She applied to Pharmac for myozyme and said she was hopeful they would say "yes".
The letter in support of her application stated that without treatment she would become wheelchair bound, ventilator dependent and would eventually die.
But still there was no funding for her.
"It's the only treatment but they said 'no', and that's a death sentence," she said.
Pharmac Medical Director Dr Peter Moodie was asked on Close Up if there is any further hope for Locke to get the drug.
"The door is open," he replied.
He said Pharmac has requested information from drug companies around the world that it can possibly use to justify funding the drug.
He said drug companies follow patients on the drug very carefully to see how they are responding, but Pharmac does not have access to that data base, and it needs this.
Pharmac says the issue is not just the money but how well treatments work, and for Lysosomal Disease, it's not convinced on this.
Locke said what she is asking for is not very much, when the government spends nearly $8 million a year on chauffeurs.
She said she now has to strap a mask onto her face to help her breathe every night, as her condition is declining.
And she needs more help doing things as the days go by.
