Chloe Old (right) raised $320 for Liam Reading after hearing his story. Photo / Paul Taylor
Chloe Old (right) raised $320 for Liam Reading after hearing his story. Photo / Paul Taylor
When Napier's Liam Reading woke up, the first thing he said to his mother was he was going to get to meet a new friend.
That friend, 9-year-old Chloe Old, had travelled from Morrinsville to meet Liam after raising money for him.
Liam has a condition called spinal muscular atrophy,a motor neurone disease which robs children of their ability to walk, stand, sit up, roll over, swallow and breath depending on the severity of the case.
He was featured on a video by Patient Voice Aotearoa, asking Pharmac to fund a drug called Spinraza, which would stop his disease from getting worse.
"I think for us the biggest thing is she is only 9, to have someone who is so generous and kind-hearted and loving towards someone she doesn't know."
Lory said having access to Spinraza would be life-changing for Liam. It'd help him with little things such as holding a drink bottle or taking a fork to his mouth.
She said it would also hopefully make his lungs stronger.
"With the condition they get really low lung capacity, so they can get sick really easily with anything, all little colds can turn to major, and that tends to be the biggest killer for these children."
Lory said it can be hard to talk with Liam about the fact the drug is not funded in New Zealand, as from his perspective it is simply not fair.
Patient Voice Aotearoa trustee Fiona Tolich said the drug stops the disease in its tracks, and in some cases had led to people regaining previously lost function.
Fewer than 100 people in New Zealand have the condition, and Tolich said Pharmac is not well set up to fund rare diseases.
"They look for medicines which will provide the greatest outcomes for the most number of New Zealanders.
"When you've got a rare disease, you don't fit into that category."
Pharmac's operations director, Lisa Williams, said the organisation understands SMA has a devastating effect on patients and families, and a funding application for Spinraza was currently being considered.
"Pharmac understands that people living with rare disorders in New Zealand face challenges accessing suitable health care, including access to effective medicines."
Liam Reading, Chloe Old and their families, who met after 9-year-old Chloe decided to raise money for Liam. Photo / Paul Taylor
Williams said Pharmac had adjusted its funding application criteria for rare disorders treatments last year, with the aim to increase the number of funding applications being submitted to Pharmac for funding consideration.
"Pharmac will continue making the best choices we can, expanding available treatments for all New Zealanders using a robust, evidence-based approach."
Patient Voice Aotearoa has set up a petition on the New Zealand Parliament website, asking for Pharmac to be reformed and its budget doubled.
Between the online and hard copies, it has more than 20,000 signatures.
Health Minister David Clark said he had no plans to review Pharmac, saying it had proven its worth over more than quarter of a century, and now has a budget of $1.015 billion.
"I'm advised that more than 100 medicines are funded for treating rare disorders through the Combined Pharmaceutical Budget [CPB].
He said select committees, rather than ministers, received petitions, and he had no doubt the health select committee would give the matter due consideration.
