The Premium Debate: Subscribers weigh in on non-funding of cystic fibrosis treatment

Edward Lee suffers from cystic fibrosis and has self-funded the Trikafta drug that alleviates the symptoms of the disease. Photo / Supplied

OPINION:

Just 31 years. That is the median age of someone born with cystic fibrosis (CF) in New Zealand. It isn't a myth, it's a fact and we have the statistics to back it up. Trikafta has made me feel like I do not have CF. It is, literally, a miracle. But here comes the kicker. Despite Trikafta being such a life changing drug, and despite Pharmac stating that it wants to fund Trikafta, it still isn't funded. (Opinion, Edward Lee)

Read the full story here: Edward Lee: Why non-funding of cystic fibrosis treatment is unacceptable

I disagree Edward, rather trying to get Pharmac to adequately fund new drugs they should instead amend Pharmac's remit back to negotiating procurement of drugs only. Then how each disease is treated should be a clinical decision made by our new health authority.
In the case of CF, treatment with Trikafta is cheaper and gives better outcomes than the current regime. As long as Pharmac sits outside of the health authority it is leading to a substantial impairment of cost effective treatment options.

- Helen A

We can argue this issue from a number of positions. I've never seen a politician who wouldn't fund all the effective drugs if the resources were there to support the funding. Nobody likes disappointing people in genuine need. The Pharmac people would choose to fund everything if they had the resources. It comes down to how much tax are the citizens prepared to pay. An interview on TV1 Breakfast suggested NZ would need to cough up around $1.8 billion each year to fund drugs currently funded by other countries. That's $1.8b every year on top of current funding levels. And then you start the "new drug" issue all over again. Many European countries have much higher taxation than NZ and have very good public services. But then they also have larger wages and larger GDPs than NZ by comparison. If NZ wants lower taxes and better social spending then something has to give. What do we turn off and who do we disappoint if we fund Pharmac fully? That's the question. Higher taxes?

- Thomas M

But if the current social and economic costs are higher to keep people sick, compared to the actual cost of the medicine then surely it makes sense to fund the medicine as it would literally save the country money.

- Edward L (In reply to Thomas M)

Here's an idea. Take the money spent on needlessly reshuffling and renaming the healthcare system and instead spend that on literally saving lives with this drug.

- Jo P (In reply to Thomas M)

This makes me so sad, when people's lives could be completely changed ( in that they can have one!) and our health services relieved of some load, and we are not doing anything to make it happen ... come on government and Mr Little this is not good enough, even if only looking at financial aspects ( GRRR) this makes so much sense - save lives, health system stress and money - surely this is a no brainer?

- Elaine R

CF is a nasty disease-as a young Lab Tech, I hated doing sweat tests on young babies to diagnose CF and the young mum would ask 'What are you testing for?' and I had to come up with an explanation that didn't worry them.
Now Vertex have come up with this life changing drug and CF sufferers cannot get it.

- Steve L