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Home / Rotorua Daily Post

The Premium Debate: Subscribers weigh in on news for cystic fibrosis sufferers

Rotorua Daily Post
17 Aug, 2022 09:00 PM5 mins to read

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This week, Pharmac said it had received a clinical recommendation that Trikafta should be funded for people aged six and older. Photo / NZME

This week, Pharmac said it had received a clinical recommendation that Trikafta should be funded for people aged six and older. Photo / NZME


OPINION

News that public funding for the cystic fibrosis "miracle" drug Trikafta could be one step closer has been met with hope and excitement.

One Whakatāne cystic fibrosis sufferer says it would be a "totally different world" if the $330,000-a-year drug was publicly funded.

Read the full story: target="_blank">Cystic fibrosis community excited and hopeful for Trikafta funding

Have your say by going to bayofplentytimes.co.nz or dailypost.co.nz and becoming a Premium subscriber.

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This is fantastic news for all patients needing this life-enhancing medication... let's hope the Ministry of Health and Pharmac can now get this "miracle drug" across the line and give patients and their families an aspect of certainty!
- Keith T


If this medicine adds 27 years to someone's life, saves us some medical costs and enables someone with CF to live a full life and kept out of hospital then it makes logical sense to fund Trikafta. $60m is a tiny amount of money in the scheme of things if one was to factor in the true, wider cost of not funding Trikafta.
- Edward L


They need $60m which is slightly more than they poured down the gurgler on the cycle bridge to nowhere... OK, cough it up then.
- Craig M

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I 100 per cent support this "miracle" drug being available to New Zealanders. Cystic fibrosis is a terrible disease and the only hope a sufferer has of surviving this condition is often by having a lung transplant - if a donor can be found in time. Even then the disease starts ruining the donor lungs. Give them the drug and let them have the best opportunity for life. We spend millions on self-inflicted illnesses (obesity, alcoholism, drugs, smoking, melanoma etc) so providing this drug gets my vote... not that it matters!
- Brendon W


A terrible genetic disease (which is why there is no cure like there is no cure for having blue eyes) but so expensive - I would vote for it if it was a cure but it isn't, you have to take it every year for the rest of your life at $300,000 a year (x 500 people makes it possibly beyond our ability to fund) = $15 million a year every year on this one disease. Sadly we just cannot fund every medical treatment - and no country can.
- John H

Discover more

New Zealand

Cystic fibrosis: Pharmac receives updated advice for funding Trikafta

15 Aug 01:00 AM
New Zealand

'A step forward': Cystic fibrosis community excited, hopeful for 'miracle' drug funding

16 Aug 12:06 AM
New Zealand

'Made my week': Cystic fibrosis sufferer gifted money by stranger

29 May 08:00 PM
New Zealand

'It saves lives': Kristie Purton could still be alive if Trikafta was available

17 Apr 12:00 AM

In reply to John H:
Hi John. This is actually incorrect. You are quoting a list price for a drug rather than the confidential price reduction. You are also not factoring in the cost savings to the system. If one could be kept well enough to work and pay taxes rather than be stuck in and out of hospital and claiming a benefit, then it might become cost neutral.
You also need to factor in the fact that it will eventually come off patent, which would lower the price significantly. So the cost isn't for life.
- Edward L

In reply to John H:
I am very glad that the decision is not yours to make, it may not be a cure but it is a treatment that allows many people to live a near-normal life (and reduce the burden on the decaying health system). CF is a surprisingly common genetic disease, one in 29 people carry the gene, with about one in 3200 live births being affected.
Why would you even think that a treatment for a very cruel disease, that affects mostly the young - since CF sufferers have a shortened life expectancy - should not be funded like it is in Australia and many other countries?
Fortunately, science is producing more and more treatments and cures (genetic therapy) for genetic conditions. These cures/treatments will eventually become more mainstream, cost-effective and should not be denied to the afflicted. As Brendon W commented: we spend millions (probably nearer billions) on self-inflicted illness, those afflicted by genetic diseases did not cause their disease, surely they deserve the treatments available?
- Kirstie K

- Republished comments may be edited at the editor's discretion.

The Rotorua Daily Post and the Bay of Plenty Times welcome letters from readers. Please note the following:

• Letters should not exceed 200 words.

• They should be opinion based on facts or current events.

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• If possible, please email.

• No noms-de-plume.

• Letters will be published with names and suburb/city.

• Please include full name, address and contact details for our records only.

• Local letter writers given preference.

• Rejected letters are not normally acknowledged.

• Letters may be edited, abridged, or rejected at the Editor's discretion.

• The Editor's decision on publication is final. No correspondence will be entered into.

Email editor@dailypost.co.nz or bayofplentytimes.co.nz

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