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Nine New Parliamentary Petitions launched for vital medicine

In the last 10 months alone, 11 petitions have been delivered to Parliament calling for medicines to be funded by Pharmac. Today, another nine petitions have been launched by Patient Voice Aotearoa (PVA) members asking that life changing, saving and extending medicines be funded for diabetes, cystic fibrosis, bowel cancer, head and neck cancer, brain cancer, epilepsy/mental health, phenylketonuria (PKU), Fabry disease and Lynch syndrome.

“This latest round of petitions is indicative of a crisis” says PVA Chair Malcolm Mulholland. “It doesn’t matter which illness you name, there are so many unfunded medicines in New Zealand and Kiwis are missing out. A staggering 20 petitions for medicines funding in less than a year is one of the clearest signs yet that New Zealand is falling behind the rest of the developed world. This puts a terrible burden on patients with a wide range of conditions, including common ones like diabetes.

“Almost a quarter of a million New Zealanders have Type II Diabetes and another 100,000 are unaware that they have the condition. Yet of the two classes of medicines that treat the disease really effectively, SGLT-2 inhibitors and the GLP-1 agonists, not one medicine is funded in New Zealand. These are medicines that are widely available in most other developed nations – including those with much weaker economies than ours – and the treatment of diabetes is putting enormous strain on our healthcare system as a whole.”

PVA Trustee Arabella Gubay, whose four-year-old daughter takes the Lamictal brand of lamotrigine for her epilepsy says “I’m thrilled about the petition urging Pharmac to continue funding Lamictal. Lamotrigine is a Category 2 anti-epileptic drug (AED) which means that brand changes are deemed to be risky. Mandatory AED brand switches are banned in most first world countries on the basis that they put already vulnerable patients at risk. The new brand isn’t even available in doses suitable for small children which will force them to go off-label in their treatment.

“Medsafe, Epilepsy NZ and almost every other organisation that works with people with epilepsy in New Zealand opposed the brand change on serious safety grounds. We’re hearing of some patients – including children – experiencing severe side effects after switching to the new funded brand. We’re also hearing of patients having severe, life-threatening seizures after months or years of being seizure free and the Centre for Adverse Reactions Monitoring (CARM) has already received multiple reports. As the mother of a child with epilepsy it’s heartbreaking to hear.”

Eddie Porter, whose two-year-old son Otis has cystic fibrosis (CF), has launched a petition for Kalydeco – a life-saving treatment for those with G551D Cystic Fibrosis that treats the underlying cause of cystic fibrosis, rather than treating symptoms. New Zealand is the only country in the OECD (with a significant CF population) that does not fund Kalydeco.

“It is a shameful truth that we don’t have access to Kalydeco in New Zealand, and it is a truth that is costing lives. Kalydeco is funded in just about every other OECD country because it works: it is a proven medicine that improves quality and length of life, and offers hope to those that so desperately need it. Families in New Zealand are suffering not because a treatment doesn’t exist, but because we as a country have decided that these are lives not worth saving. This must change.

“Our son is now two years old, and his outlook would be very different – and vastly improved – if he had been born in a country other than New Zealand. Cystic Fibrosis is a degenerative condition and Kalydeco halts that decline, so the sooner we’re able to get him access to this medication, the less damage he has to suffer. His health, happiness and future are at the mercy of an aging and outdated medicinal funding system, and one that is currently letting him down.”

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