Patients Stories
Freda Evans
John Ashton
Emilia La Laconos
Dr Rosalie Stevens
Dana Smith
Fiona Tolich
Freda Evans fight for life with NZ’s health system.
John Ashton should be four years dead
Unfunded software under Emilia La Laconos skin helps save her life
Battling for patients to access unfunded medicines
Forced under the knife because medicine isn't funded.
Mum with rare disease devastated by decision
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.
John Ashton was was a fit non-smoker who could run 10km in 35 minutes. By the time doctors worked out what was causing his chronic cough, John was riddled with tumours
Diagnosed with Lung cancer the prognosis was looking grim until with a bit of blind luck he came across breakthrough research trialling a new medicine.
The article he found was Australian research trialling a new medicine which targeted his particular mutation of lung cancer. His oncologist here didn't know it existed.
Four years on John is still here, still taking the new medicine and taking part in all the things with his family that he would have missed.
This medicine remains unfunded in New Zealand for lung cancer but is publicly funded for Australian patients.
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.