Jessie McKay, pictured in New York, is training to become a flight attendant. Photo / Supplied
Jessie McKay can now pursue her dream as a flight attendant much more easily after the drug Trikafta became publicly available in New Zealand on Saturday.
The 21-year-old Tauranga woman says she is looking forward to moving to Auckland, starting a new career and travelling to new cities.
“I can do this without having to worry about getting sick,” she told the Bay of Plenty Times.
McKay has cystic fibrosis - an ultimately terminal condition that produces thick and sticky mucous and mainly affects a person’s lungs and digestive system.
Trikafta treats its underlying cause, but at $330,000 per year, the drug has been out of reach for many families as it has previously not been publicly funded in New Zealand.
In the past year, several Bay of Plenty families have spoken out about the need for Trikafta to be publicly funded, including Rotorua mother Trish Daniels, who feared her 19-year-old son would not make it to his 21st birthday without it, and Tauranga father Glenn Ford, who was considering moving to where it is funded overseas.
In December, Pharmac announced funding for Trikafta was proposed to start on April 1.
In March, Pharmac confirmed the funding of Trikafta for people with cystic fibrosis, aged six and above, who met certain eligibility criteria.
McKay, who is in the middle of her flight attendant training in Auckland, said her family would be picking up Trikafta for her from Tauranga Hospital today.
“It’s really exciting - I almost can’t believe it’s actually happening until I have it in my hands.
“It’s not only a weight off my shoulders, but my mum’s. She’s always been so so worried ... now she’s just going to be so much more at ease.”
McKay said this was even more important now, as she would be moving to Auckland once she graduated as a trans-Tasman flight attendant in about two months.
“It’s nerve-racking, but also super exciting. I’ve always known that I would outgrow Tauranga - there’s just not as many opportunities for young people.”
McKay, who has worked in hospitality and retail, said she was hired as a flight attendant at the start of 2021, but due to Omicron, the opportunity fell through. She started applying to several airlines and has since been hired by a different one.
“I’m just looking forward to seeing Australia and even different parts of New Zealand - I’ve never been to Queenstown or Christchurch, so I’ll be going to those airports ... and then I’ll be doing Brisbane, Melbourne, Sydney ... so just experiencing new things and a little bit of independence.”
McKay said having cystic fibrosis had previously limited her ability to travel, which she discovered on a three-month trip to America.
“I felt really restricted. A lot of my friends went to Canada after that [and it] wasn’t even an option ... because the amount of medication for three months’ worth was pretty much my whole suitcase.”
Once she starts on Trikafta, McKay will need to take just three tablets a day.
“It’s just so much easier.”
McKay said having Trikafta would also relieve the stress from her family.
“My mum has always been worried, and it just puts a really big strain on everyone.”
Karin McKay, Jessie’s mother, said Jessie getting Trikafta felt like “an exhale”.
“We’ve been holding our breath for 21 years, and we can finally exhale. And she can lead a long and prosperous life, which is all I’ve ever wanted for her.”
Her mother said Jessie was diagnosed with cystic fibrosis at five weeks old.
“Back then, the age to survive wasn’t very long or old, so we didn’t know how long we’d have her for.”
Her mother said her daughter had been “very sick” over the years.
“Now, it’s not going to happen. Now it’s just leading a healthy, normal life for Jessie. She can have a career - the world is her oyster now.”
Cystic Fibrosis New Zealand chief executive Lisa Burns said funding Trikafta was “nothing short of momentous” and it was a “significant milestone” for those who were eligible.
“With a current life expectancy of 31 in New Zealand, Trikafta could give people with cystic fibrosis benefits equivalent to 27 more years, which opens opportunities for a future that they never thought would be possible.”
Burns said it was “delighted” New Zealand was one of the few countries in the world with “such extensive access to Trikafta, which includes rare mutations”.
The priority was to ensure all people with cystic fibrosis who could benefit from modulator therapy had access to one that worked for them.
“This is so important for our community to ensure equity of access and that no one is left behind.
“Our cystic fibrosis community won’t be able to just take a tablet and walk away. In many cases, they’ll need to maintain existing treatments including exercise, and they’ll need ongoing support as they transition through some big life changes.”
Pharmac director of operations Lisa Williams said the agency expected about 370 people to be eligible for funded access to Trikafta.
“Trikafta has not been shown to work for all people with cystic fibrosis, and the eligibility criteria target funded treatment to those that it will work for.”
Pharmac also funded another cystic fibrosis treatment, ivacaftor (Kalydeco), which was used by about 7 to 8 per cent of people with cystic fibrosis.
“Some of these people will change to Trikafta, but others will remain on Kalydeco as Trikafta won’t work for their specific gene mutations.”
This meant about 90 per cent of people with cystic fibrosis in New Zealand will have mutations responsive to these targeted therapies, she said.
“Having a medicine with this level of investment secured for our communities is a big deal, and we’re grateful to everyone who has been a part of this process.”
In a statement on March 7, Williams acknowledged the time people had put into advocating for those living with cystic fibrosis and those who had shared their personal stories.
“We have heard them all, and we know there will be a lot of people relieved to hear that we are funding Trikafta.”
Vertex Australia and New Zealand senior country manager Sabrina Barbic said it was “delighted” eligible New Zealanders with cystic fibrosis could access Trikafta on the pharmaceutical schedule from April 1.
According to the Pharmac website, prescribers will need to apply for a special authority on behalf of people diagnosed with cystic fibrosis.
Prescribers will need to confirm the person meets six certain access criteria, including the patient having either two cystic fibrosis-causing mutations in the cystic fibrosis transmembrane regulator gene or a sweat chloride value of at least 60 millimoles per litre.
Once an application has been approved, people can go to any Te Whatu Ora - Health New Zealand inpatient hospital pharmacy to collect Trikafta.
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