Government paid for her bypass, but not the medication she needs afterwards

64-year-old Jenni Caldwell is weeks away from retiring to protect her health.

But the medication she needs to stay alive will cost thousands of dollars every year.

The Kāpiti Coast woman lives with familial hypercholesterolaemia (FH), a genetic condition that causes dangerously high 'bad' cholesterol and puts people at risk of heart attack or stroke at an early age. It runs on both sides of her family.

Jenni had a heart attack at 47 and was told then that open heart surgery would likely follow. She has just had a triple bypass.

The Cardiac and Respiratory Foundation is calling on Pharmac to fund a class of medicines called PCSK9 inhibitors that reduce 'bad' cholesterol. This medicine could transform the lives of about 4000 Kiwis every year.

Jenni can't take statins – the standard cholesterol treatment in New Zealand.

"Within three or four weeks, my muscles seize. I can barely walk, and I'm in agony."

She's currently trying a last resort medication that is unlikely to help her.

Diet can only control about 20 per cent of her cholesterol, Jenni says.

"The other 80 per cent needs drugs.

"The government has spent thousands of dollars on my recent bypass – and I am very grateful – however, moving forward, without appropriate medication, I will become unwell again," she says.

"If you can't offer the follow-up care, don't offer the surgery in the first place. It's setting people up to fail."

PCSK9 medicines can dramatically lower levels of 'bad' cholesterol, offering patients like Jenni a chance to make the most of life.

But in New Zealand, these treatments aren't funded.

Patients must either pay $9000 per year themselves or go without, leaving their cholesterol dangerously high. Jenni will be living on the pension alone.

Currently funded cholesterol medications aren't enough to reduce 'bad' cholesterol to a safe level for patients living with FH.

Pharmac and the Government need to listen to the cardiologists, Jenni says.

Foundation Chief Executive Ms Letitia Harding says the situation reflects a wider national failure.

"Unfortunately, Jenni's story is not unique - it is the reality for thousands of New Zealand families living with FH, an inherited heart disease.

"They are living with a constant ticking time bomb inside their chest, while the treatments that could save their lives are sitting on the shelf, out of reach."

The lack of funded treatment options for heart disease, in general, is appalling, Ms Harding says.

"We are decades behind other countries, including Australia, where these medications are already funded and changing lives."

Pharmac needs to ring-fence a dedicated fund for cardiac drugs, she says.