Freda Evans has been fighting the New Zealand health system for the last 30 years. Diagnosed with Pompe disease when she was 32 (a disease so rare she was the only one in New Zealand with it at the time) Freda has been fighting to access medication that is readily available in 60 other countries. The medicine progressively slows the debilitating effects of Pompe disease and shows many benefits for those of whom are struggling with this disease.

However this medicine still remains unfunded in New Zealand for adult sufferers of Pompe disease. Fortunately for Freda, she has been granted compassionate access to this medicine which has greatly improved her quality of life.

At just seventeen months old, Emilia is one of the youngest New Zealanders living with type one diabetes. Her parents Vito and Jo found it extremely challenging trying to manage her disease. They barely slept, pricking blood from her toes on the hour, day and night, to check if her glucose levels were too high or low.

Revolutionary new technology is saving them. Under her skin, Emilia now has a sensor inserted. It reads her blood sugar level continuously and sends the data by Bluetooth to her parents’ phones. If her levels get too low, or too high, an alarm goes off.

But this comes at a cost as the new technology is not publicly funded in New Zealand (it costs the family $10,000 a year). In Australia, the technology is free for all type one diabetics aged under-21.

Dr Rosalie Stephens turns up to work these days with hope. Three years ago, the Auckland oncologist was delivering the devastating news to many advanced melanoma patients that they would be dead within a year. Today, she doesn’t have to put a time limit on their life.

She decided to take a stand and become vocal about access to a new medicine that could save her patients lives.

Fortunately, after repetitively going up against the system the unfunded medicine is now publicly accessible for her patients with melanoma. Today, she estimates up to 100 people in Auckland alone are only alive because of the medicine.

However, she is still battling to get access to other medicines that are stuck in limbo. The priority medicines that wait for public funding that sit on the medicines waiting list.

25 year old Dana Smith was forced to have surgery as a drastic last resort after years of pain from Inflammatory Bowel Disease (IBD). Her disease restricted her ability to live a normal life and her body was suffering significantly. 

Dana has had her colon removed, and now a bag collects her body's waste. She is having to adjust to life with a colostomy bag attached to her 24/7.

There was another option for Dana to treat and manage her IBD using a modern medicine. However it is not funded in New Zealand and she could not afford to pay for it out of her own pocket.

There are many other New Zealander's living with IBD - Chron's disease and ulcerative colitis who are waiting for medicines to be funded in order to avoid going under the knife.

Fiona Tolich was a sporty, healthy and active person - as a kid she played first XI cricket, hockey and football, and as an adult was a regualr gym-goer.

When she became pregnant at 30, her knees began to give way - she was diagnosed with spinal muscular atrophy (SMA).

SMA is a rare disease - in New Zealand between 75 and 100 people have it. However, the only treatment for SMA is not publicly funded in New Zealand, with the funding decision recently being deffered.

Without this medicine, patients with SMA, like Fiona, will deteriorate. Time is not on their side.

At 10 months old, Dylan Wright had his first anaphylaxis reaction. He was raced to hospital for a life-saving shot of adrenaline, and his parents went home with a device that would become his constant, crucial companion.

The tool Dylan needs to treat his allergic reactions quickly and easily costs up to $180, can only be used once, and expires after 12-18 months. It has been on the medicines waiting list, waiting to be publicly funded, for over 14 years.

For Dylan it means the freedom to go to school, play sports, and visit friends because his mum knows others can use it easily in an emergency. Life looks very different for families who can’t afford it.

Dylan's mother Rebecca would like those responsible for medicines funding decisions to consider more than just cost.