Adalyn Delaney was suffering the effects of CF before she was even born, with health staff discovering during a scan that she had a bowel obstruction. The moment she was born, she had to be rushed away to surgery.<\/p>\n
Adalyn Delaney, 4, moved to Australia with her family, including 1-year-old Emily Delaney, to access Trikafta.<\/p>\n
Adalyn had to have two surgeries within her first five weeks of life, and another at the age of 1 to get scar tissue removed. She has been hospitalised multiple times, including for pneumonia, a collapsed lung and another bowel obstruction.<\/p>\n
She has to go on a nebuliser (a mask-like device that turns medicine into a vapour she can inhale) three times a day when she is healthy, and must take medication when she eats to help her body digest food properly. Before going on Trikafta, she went on antibiotics every time she got a cough.<\/p>\n
Since getting to Queensland in June, Adalyn was quickly prescribed Trikafta and has been on what she calls her \u201cspecial pill\u201d now for several weeks. While it is still early days, the medication appears to be working well so far, with Adalyn experiencing a spike in energy and hunger, and a lack of tummy aches.<\/p>\n
Delaney said it was \u201creally heartbreaking\u201d to leave behind their support networks, friends and family, but they had to make the decision for Adalyn\u2019s health.<\/p>\n
\u201cChildren don\u2019t want to be strapped to nebulisers, they want to be playing and all that.\u201d<\/p>\n
Delaney said it was disappointing it was \u201ctaking so long\u201d for the drug to be funded for young children in New Zealand.<\/p>\n
Adalyn Delaney calls Trikafta her “special pill”.<\/p>\n
\u201cIt\u2019s definitely a condition that affects things from birth … the sooner the better that children can go on it for better long-term outcomes.\u201d<\/p>\n
The family have thought about whether they would move home once Adalyn turns 6, but Delaney said Australia was funding more medications that may have a better impact on Adalyn.<\/p>\n
\u201cWe want NZ to keep pace with treatments, not just catch up. We need to be where she\u2019ll get the best care.\u201d<\/p>\n
\u2018This can change the trajectory of their lives\u2019<\/b><\/p>\n
The chief executive of Cystic Fibrosis New Zealand, Lisa Burns, said New Zealand was \u201cjust so far behind\u201d other countries in providing Trikafta to children.<\/p>\n
Children were suffering irreversible damage to their bodies before the age of 6, she said.<\/p>\n
To the best of her knowledge, about 55 children in New Zealand would benefit from the drug being funded for them.<\/p>\n
She noted Pharmac\u2019s Pharmacology and Therapeutics Advisory Committee previously said Trikafta could add 27 years to someone\u2019s life. While previous estimates have put the average life expectancy in the 30s, updated figures in Australia, where more medications have been funded for longer, are closer to the mid-50s. <\/p>\n
Alex and Kayla Delaney moved their two daughters, Adalyn, 4, and Emily, 1, to Australia to access the drug for Adalyn.<\/p>\n
\u201cWhen children are normally learning to walk and explore, these kids aren\u2019t. They\u2019re going through hours of treatment regimes and having to spend time in hospital, and they don\u2019t get to have the same opportunities, and this medication could drastically help to improve that in this age group. It\u2019s so important,\u201d she said.<\/p>\n
\u201cMy message to Pharmac is please recognise the value that is being delivered from the patient population … we want to see equitable, accessible treatment for our children.<\/p>\n
\u201cI just don\u2019t understand why we wouldn\u2019t do it, this can change the trajectory of their lives.\u201d<\/p>\n
\u2018It was literally life-changing\u2019<\/b><\/p>\n
Hanna Meates, 33, went on Trikafta a couple of years ago when Pharmac began funding it for people over 6.<\/p>\n
\u201cEverybody should be able to have access to something like that if it\u2019s going to literally save their life … like, they can avoid all the lung damage and all of that stuff that\u2019s irreversible,\u201d the Lower Hutt woman said.<\/p>\n
It was an opportunity for them \u201cto have a normal life right off the bat\u201d.<\/p>\n
\u201cI think something like Trikafta is the most incredible medical breakthrough that we\u2019ve had for cystic fibrosis.\u201d<\/p>\n
Meates had never expected to have a long life, and upon starting Trikafta, her emotions were \u201cquite indescribable\u201d.<\/p>\n
\u201cFor the first time, I actually had a future to look forward to and a future that I could plan for and know that I was going to have that and be healthy for at least most of it.<\/p>\n
\u201cIt was amazing but also scary in a way as well, because like, you grow up and you\u2019re told that … you\u2019re not probably going to have a long life. So you live your life like that. <\/p>\n
Hanna Meates, 33, started taking Trikafta for her cystic fibrosis, and said the medication was life-changing.<\/p>\n
\u201cI didn\u2019t plan for anything. I don\u2019t have savings or anything. I didn\u2019t care about what was going to happen, so I was just living in the moment, and then suddenly you do have a future and then you have to start thinking about savings and what you\u2019re going to do for your future.\u201d<\/p>\n
Meates said her symptoms were significantly reduced on Trikafta. She still experiences more shortness of breath than the average person and can get quite tired, but aside from that and a persistent cough, she otherwise feels healthy. <\/p>\n
\u201cYou\u2019re one way your whole life and you don\u2019t really know what you\u2019re missing out on, and then suddenly your life just completely changes.\u201d<\/p>\n
Before Trikafta, she couldn\u2019t exercise or hold down a full-time job, or even go for a light walk without running out of breath.<\/p>\n
Now she can go to the gym and live life relatively normally, and has a full-time job as an adviser in a government department.<\/p>\n
\u201cIt was literally life-changing,\u201d she said.<\/p>\n
Pharmac\u2019s director of advice and assessment, Dr David Hughes, said when they funded Trikafta for people over 6 in April 2023, Trikafta only had approval for that age group at the time.<\/p>\n
\u201cThe company obtained Medsafe approval for Trikafta for children aged 2 to 5 years in March 2025, after supplying clinical trial data for this age group,\u201d he said in a statement.<\/p>\n
A year ago, a respiratory advisory committee recommended Pharmac fund it with a high priority for people aged 2-6 who met certain criteria.<\/p>\n
\u201cOur teams are working hard to finish our assessment of this application, which is well under way. Once our assessment is complete, we will then compare this application against applications for other medicines that people would like us to fund on the Options for Investment list.<\/p>\n
\u201cWe can\u2019t say if or when a decision about funding this medicine will be made. It depends on things like the budget we have available, the success of negotiations with suppliers, and how we\u2019ve prioritised this medicine against others.\u201d<\/p>\n
In a statement, Vertex, which makes Trikafta, said more than 40 countries, including those with a similar funding system to New Zealand, were funding the drug.<\/p>\n
\u201cVertex is keen to explore innovative funding solutions with Pharmac so that eligible children ages 2-5 years can have sustainable access to Trikafta as soon as possible.\u201d<\/p>\n
Melissa Nightingale is a Wellington-based reporter who covers crime, justice and news in the capital. She joined the <\/b>Herald<\/b> in 2016 and has worked as a journalist for 10 years.<\/b><\/p>\n","protected":false},"excerpt":{"rendered":"Adalyn Delaney was suffering the effects of CF before she was even born, with health staff discovering during…\n","protected":false},"author":2,"featured_media":7646,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[274],"tags":[7721,4465,1128,7726,7719,7713,7725,7715,5006,18,1652,6917,4080,7723,7712,7717,135,7716,19,17,7724,7710,7718,7124,462,7711,7722,6158,7720,1213,7714],"class_list":{"0":"post-7645","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-medication","8":"tag-4yearold","9":"tag-access","10":"tag-australia","11":"tag-body","12":"tag-cf","13":"tag-cystic","14":"tag-damage","15":"tag-daughter","16":"tag-drug","17":"tag-eire","18":"tag-family","19":"tag-fibrosis","20":"tag-for","21":"tag-further","22":"tag-get","23":"tag-have","24":"tag-health","25":"tag-hutt","26":"tag-ie","27":"tag-ireland","28":"tag-irreversible","29":"tag-kiwi","30":"tag-lifechanging","31":"tag-lower","32":"tag-medication","33":"tag-move","34":"tag-prevent","35":"tag-small","36":"tag-their","37":"tag-to","38":"tag-trikafta"},"share_on_mastodon":{"url":"","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/7645","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/comments?post=7645"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/7645\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media\/7646"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media?parent=7645"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/categories?post=7645"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/tags?post=7645"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}