The Voices


Pompe Disease

For almost 30 years, Freda has been fighting a health system that knows she is suffering, but won’t acknowledge her illness, or fund the drugs that will slow her deterioration.

“I’ve walked the road to Parliament five times, I’ve protested, and I’ve pleaded for my life, but they don’t listen. They just escort me out of Parliament.”

Freda was diagnosed with late-onset Pompe disease in her early 30s, a genetic condition that triggers limb and respiratory muscle weakness, and is relentlessly progressive. It slowly disables the heart and skeletal muscles and while there is no cure, more than 75 countries fund a drug that was developed 15 years ago to improve lung function, muscle strength and quality of life for sufferers of this awful disease.

The drug, Myozyme, is funded in New Zealand only for infantile-onset Pompe disease, but there’s a catch; no infant has ever been diagnosed with Pompe in New Zealand.

There are 12 adults with the late-onset form of the disease, but Pharmac doesn’t fund the drug for their treatment. Instead, the drug sits on the shelf, out of reach for New Zealand’s adult sufferers.

“Every time there’s an election, they tell us they’re listening. They tell us that if they get into Government, they’ll help us to get access to the medicines we need.”

But Freda says it changes once they enter the Beehive. The door closes.

“They go deaf again.”

“If you aren’t prepared to help us, if you aren’t going to give any more money for medicines, just tell us. Stop stringing us along.”

Four years ago, Freda was granted access to Myozyme through an international compassionate access programme; a programme geared towards supporting Third World nations or countries with underdeveloped health systems.

New Zealand doesn’t fall into either category, and now has the worst access to modern medicines in the OECD, and the lowest per capita spend on medicines in the developed world.

Freda receives her Myozyme from Australia; a country which has publicly funded the drug for adult-onset Pompe disease for more than six years.

“I’m here because of the Australians, and I will be forever grateful. I told them I will never support their rugby team, but they are keeping me alive. How about that? Thank God for the Australians. I am here because of them.

Freda says the drug stabilises the disease and prevents deterioration, but by the time she received it, much of the damage had already been done. She sleeps with a ventilator, but sometimes the disease takes hold of her lungs, and she is hospitalised, often for days at a time.

“If I can’t breathe, I end up in Middlemore. And it’s usually in the night. And I lie in that hospital bed and I pray, and I pray. I say to God, ‘please God, not today. Please, not today’, and I think of my mokopuna, and they carry me. They carry me through the night when it’s dark and I’m alone, and I’m struggling to breathe.”

Freda says it’s getting harder to live, but she hasn’t let the disease orchestrate her life. She runs a kōhanga reo, is a Justice of the Peace, and is active in her marae.

“I get on with my life, but I live with such fear. Always, this great fear. I am scared of dying.”

“What do I want? I want to know that whatever happens to me, they’ve got something in the pipeline for the next generation. I’ve put up a good fight. Actually, a bloody good fight, but look at me. I’ve had it. I just want to make sure New Zealanders who are diagnosed with this disease get the drugs they need in future. That’s all.”

She pauses for a moment. Her breathing is laboured.

“I don’t want anyone to feel my pain, but I want them to hear my voice.”

“This is not the life I envisaged. Single at 66. Living in a small unit. Struggling to do the basics like dust my dresser. Needing help to put my stockings on. Cutting my food up so I can swallow it.”

“People tell me they can imagine what it’s like. No, they can’t. Do you know what it’s like to be too weak to hold your mokopuna when they are babies? Do you honestly know what that feels like? I am too weak to hold my babies.”

Freda, who has two sons, was diagnosed when she was 33 and says she was told by a doctor that she wouldn’t make 40.

“I have no dignity. I need someone to shower me. To wipe me. This is not the life I ever imagined.”

“I don’t want your pity. Don’t give me that, please. I just want people to understand that there are thousands of New Zealanders who need medicines, and they are left alone to suffer. New Zealand is not a poor country.”

Freda can’t move easily without her Zimmer frame, and her breathing is laboured. She says it’s been a long journey, but she’s still committed to getting access to the medicine for future generations of sufferers. She says she wants to help “people who’ve still got places to go, and things to do in their lives”.

She pauses for a moment. It’s tiring for Freda to talk for too long, and her breathing is heavy.

“Look, I want the Government to know this. You listen to me. I’m still here, and I’m not going quietly.”

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New Zealand needs access now to modern medicines to treat Pompe Disease.

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Achieve a measurable, political commitment to reform Pharmac and create a fit-for-purpose drug-buying agency that supports and enables greatly improved access to modern medicines – and ensure a direct line of political accountability.




Introduce a globally accepted modern, cost-benefit analysis for medicines and medical devices which looks at the ‘value’ of a medicine, and considers the financial, economic, and social impact of untreated disease on our society.




Develop a Medicines Strategy to guide the decision-making process, create measurable targets to reduce Pharmac’s waiting list, and detail how the agency will respond to rapid developments in modern medicine to improve health outcomes for New Zealanders.

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