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.”