Freda Evans was blocked by security before she could get to the then Prime Minister, John Key.
“It’s a no go,” the surly guard at the Beehive front desk said, after a call to his office.
"I said a few unspeakable words," the Auckland mother remembers, as she was shown the door. "It just rips your guts out."
A thirty year fight for life
It was one of many setbacks for a woman doing everything to fight for her life.
Freda, now 63, has been watching her body give up on her for thirty years, due to a rare genetic disorder known as Pompe disease. Unlike 60 other countries, New Zealand does not fund the medicine that halts its progress.
Freda was diagnosed at 32, with a condition so rare she was the only one in the country with it at the time. "I said 'Oh - so how do we fix that? What do I have to take?'" she recalls. She was met with dead silence from doctors.
Pompe, which disables the heart, diaphragm and skeletal muscles, is often fatal. Back then, there was no treatment. "How do you explain to a 13-year-old and a two-year-old that their Mumma is going to die?" she asks. “We never mentioned that again, and I made a promise to myself that I would fight it."
Freda went back to work, raised her sons, and travelled overseas to find out everything she could about her condition. Then, miraculously, there was hope: a new enzyme replacement therapy was developed to stall Pompe's debilitating progress. The downside? It cost $400,000 a year.
Medsafe approved Myozyme for use in New Zealand in 2009 but Freda was devastated when PHARMAC, the government agency which decides how to spend the medicines budget, refused to fund it for adult Pompe sufferers.
It said it had not seen evidence that it "provided significant enough benefits to patients to justify its very high price.
"It makes you feel that you're actually worthless," Freda says.
The New Zealand Organisation for Rare Disorders (NZORD) chief executive, Dr Collette Bromhead, says Myozyme IS cost effective - which is why in countries like America it’s prescribed to Pompe patients immediately.
"If you can supplement them all with Myozyme from an early age you certainly get a far less disabled person - someone who is able to work, someone who is able to have a family and have a normal life. And they're not such a drain on the ancillary medical services," she says.
"The model is flawed. You have a group of very sick individuals in New Zealand who are not getting the medicine they need to survive and live long and healthy lives."
With no treatment, Freda's muscles have become so weak her neck droops, she needs a wheelchair to get around, and depends on an oxygen machine to breathe for her at night. Despite that, she still works as a Kohanga Reo manager, is the chair of a kura, sits on a board at her marae, and is a Justice of the Peace.
A year ago, she finally had a breakthrough. The company which makes Myozyme, Sanofi, gave Freda and three other New Zealanders with Pompe compassionate access. She's just had her 23rd infusion
She's found she has more energy and can breathe more easily. "I can walk longer distances. I can bend over to scrub the toilet. Do my ironing. It's the little things!" she says.
Freda says she knows she would have had a better quality of life had she been given Myozyme earlier - but she doesn't want to dwell on what might have been. She now has three granddaughters to live for.
"Life is much more important than holding grudges against people. I parked PHARMAC up and said ‘Nah you’re too energy consuming, don’t need you’. So I parked them up and just got on with life."
PHARMAC says it is working on a new process for considering medicines for rare disorders. It's establishing a new clinical advisory subcommittee to focus specifically on funding applications from suppliers in this area.
"We continue to be in discussions with suppliers of a number of rare disorders medicines, and are confident of reaching agreements, and consulting on these proposals over the next few months," Chief Executive Sarah Fitt says.
NZORD's Collette Bromhead says anyone unlucky enough to be diagnosed with a rare disorder here shouldn’t hold their breath.
"My advice? Go to Bulgaria. Go to Serbia. Go to Colombia even. Go anywhere but New Zealand because medicines for rare disorders are funded better in those countries than they are in New Zealand.
"Go and seek refugee status somewhere else! Because honestly, it’s not worth the pain and the fight."
This story was created for priorities.nz