It is inhumane to let New Zealanders continue to suffer from a treatable disease

There are kiwis in hospital this morning with a disease that is ravaging their lungs.

It's called Cystic Fibrosis. 

Rachel Smalley: Cystic Fibrosis sufferers need access to modern medicines now
Trikafta costs a lot. A lot. It has a hefty list price, but it’s likely Pharmac will use its monopolistic powers to strike a deal.
00:00 / 04:48

If you ask someone with this disorder what it's like to live with this condition, they will tell you it’s like trying to breathe through a straw – every breath, every minute, every day.

Some-550 kiwis live with Cystic Fibrosis and they’re largely young; that's because you don’t make it beyond your late thirties. Your lungs, in the end, give out. 

Cystic Fibrosis is a genetic condition. Some of us will be carriers of the gene, and we will never know. You only find out if you have a child with someone who is also carrying the gene,  and then your child has a 25 percent chance of developing Cystic Fibrosis. 

It impacts your health in a number of ways, but it's predominantly in the lungs. You produce large amounts of mucus so it feels like they’re drowning, and your pancreas also produces too much mucus too. That has a shocking effect on how you digest food. You can get very, very thin with this disease. 

Sufferers end up in hospital every year, often for months at a time, because they are permanently fighting lung infections which can quickly escalate. You take antibiotics 24/7 - typically intravenously, through a pump.

But here is the thing – there is a drug that puts this disease to bed. You may have heard of it. It’s called Trikafta and over the weekend, the Australians announced they will fund it. It’s the fourth treatment they have funded in eight years to treat cystic fibrosis. They recognise that there are just so many savings to be made across the health sector. Kids live full lives, and the disease is silenced. 

Here, in New Zealand, our ‘medicine’ if you can call it that, is saline solution. Our kids sit on the end of nebulisers four or five times a day and suck saltwater through a nebuliser into their lungs to make them cough and cough and cough, and they vomit up the mucus. That's how they try and clear their lungs. They do that every day, four or five times a day and through the night.

The older they get, the more their lungs start to deteriorate, and they may eventually go on a waiting list for a bilateral lung transplant. That will cost the taxpayer close to a million dollars and the survival rates of that procedure aren't great. 

Trikafta, meanwhile, is three tablets a day. One in the morning, two at night. That’s it. Three pills a day. Parents can go back to work. The sufferer can lead a normal life, play sport, hold down a career, contribute to the economy, and not face life, potentially, on a sickness benefit. 

Pharmac wants to fund it. Our drug-buying agency says it's a paradigm shift in the way the world is treating this disease. 

Here is the thing -- Trikafta costs a lot. A lot. It has a hefty list price, but it’s likely Pharmac will use its monopolistic powers to strike a deal. It’s thought to be around the $200k a year mark, per person. It’s not cheap.

It has taken years to develop this drug and a billion or so dollars -- the drug company wants a return on that investment. I'm no champion of big pharma, but I understand that model. It's the world we live in today. It's a capitalist market. 

However, we need to apply some common sense here. When you consider the cost to the taxpayer of not funding Trikafta, suddenly that drug gets a lot cheaper. 

Kids aren't taking up ICU beds, often for weeks at a time. There's no need for the myriad of MRIs, ongoing specialist care, parents can go back to work, no need for lung transplants...and so it goes on.

A simple cost-benefit analysis by our government would reveal we can’t afford 'not' to fund Trikafta.

Sadly, this drug sits on Pharmac’s waiting list alongside another 77 medicines. Yes, that's right. Trikafta now joins another 77 modern medicines languishing on Pharmac’s list of medicines it would like to fund, but can’t. Why not? Underfunding. Over the last decade, successive governments have grossly underfunded Pharmac to a point where it now needs an additional $450m every year to meet the immediate medicinal needs of New Zealanders.

There are so many drugs we don't fund. We now sit at the bottom of the OECD for access to modern medicines. Some of the meds we need are funded in Venezuela, for goodness sake, but not here. 

This is what I would say… It is inhumane to let New Zealanders continue to suffer from a treatable disease. Put yourself in the shoes of these parents watching their kids struggle for air and facing an early death. 

Sit with that for a moment. That is the New Zealand we are living in today.

This needs a solution. Kiwis need access to modern medicines now.