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“I immediately started crying” Life changing drug on the horizon

Carterton woman Reese Robertson has lived with cystic fibrosis her entire life. Now, funding for a new medication could mean that life is extended by 27 years. GRACE PRIOR reports.

When Reese Robertson was diagnosed with cystic fibrosis at birth, her parents had no idea what it meant.

The life-threatening genetic disorder, cystic fibrosis [CF], damages and clogs organs with thick, sticky mucus, and there is currently no cure.

Robertson was given 40 years to live, but with the life-changing drug, Trikafta, on the brink of being funded by Pharmac, that life expectancy could be extended by three decades.

She said she was in her cabin when her mother called to tell her about the proposed funding.

“I got a call from mum, and she asked me if I was watching the news.

“I said, ‘no, I’m not,’ I didn’t know they were doing an announcement or anything, and then she just started crying.”

Robertson said her mother told her Trikafta was closer to being funded in New Zealand.

“I immediately started crying; it was just such a good moment, I was really emotional.”

Pharmac director of operations Lisa Williams said with a budget increase in May, and commercial negotiations with the supplier, Vertex, the agency was in a position to begin consultation on Trikafta funding for people aged six years and above who met eligibility criteria.

Williams said Trikafta could give people with cysticfibrosis up to 27 more years of life at full health as compared to supportive care.

Robertson said she fit the criteria for the drug and hoped funding would remain in New Zealand.

If all went to plan, people like Robertson could have the drug by April 1 next year.

Robertson said the drug had cost a “ridiculous price” for people who had taken their health into their own hands and imported it, and said it was heartbreaking that Pharmac had so far not funded the drug.

She said she knew 16-year-olds who were likely to die if they did not receive Trikafta soon.

“They [Pharmac] could pretty much decide who lives.”

Robertson said it was tough having her health, and life, in the hands of people she had never met.

She said her childhood had been hard at times, spending weeks away from school and having to work extra hard to keep up with her friends both in the classroom and on the sports ground.

“I had good support around me from my family and friends, but I would always feel self-conscious about it.”

She said always having a cough and taking medication at school in front of her friends was “quite full-on”.

Robertson said she spent a period of time in hospital every year during that time, and had to take antibiotics frequently, spending countless nights awake and coughing.

Now 20, Robertson has moved away from the schoolyard and into adult life with the disorder, and she is not letting it hold her back.

“I’ve always been relatively determined and motivated to stay fit because I play hockey, and I’ve always had to put in extra effort just to stay on top of things.”

When it came to the new drug, she said it was a bit of an unknown for people who had not taken it before.

“I have heard that people who have had it don’t cough anymore, they don’t struggle to breathe, they’re pretty much like a normal person.”

Robertson has been studying health promotion at Victoria University of Wellington, focusing on the mental and physical wellbeing of adolescents.

She said she would like to work with students who had disabilities and disorders, in particular, drawing from her own experience.

Although funding for Trikafta was within grasp, she said the battle was not yet won.

“There are so many other people [with other disorders] who are waiting to have their drugs funded and who are still dying.”

Robertson said Trikafta’s funding consultation was due in large part to advocacy by the cystic fibrosis community and said disorders needed to be discussed in order to be better understood.

“I don’t want people to think that cystic fibrosis will always hold people back, you have to be so strong to have it, and you’ve got it for your whole life.”

Grace Prior
Grace Prior
Grace Prior is a senior reporter at the Wairarapa Times-Age with a keen interest in environmental issues. Grace is the paper’s health reporter and regularly covers the rural sector, weather, Greater Wellington Regional Council, and coastal stories.

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