Mystery donor gifts $27k drug ‘lifeline’
The box arrived on the doorstep with a note: ‘Keep fighting hard — you’ve got this’
Amysterious “lifeline” has arrived on the doorstep of cystic fibrosis sufferer OJ Daniels’ Rotorua home. An estimated $27,500 worth of “miracle drug” Trikafta was delivered to his home on Tuesday by a courier — sender unknown.
The 19-year-old said he had received a one-month supply of Trikafta — a drug that treats the underlying cause of cystic fibrosis.
The anonymous sender wrote on the box: “Keep fighting hard — you’ve got this. I hope this helps.”
OJ said, “I actually still can’t believe it’s actually in my hands.”
His mother, Trish Daniels — who has already lost one child to cystic fibrosis — called the delivery a “miracle”.
Cystic fibrosis is a genetically inherited condition that produces thick and sticky mucus and mainly affects a person’s lungs and digestive system. Specialists believe the average life expectancy of a person with it is mid-to-late 30s.
Trikafta is not publicly funded in New Zealand. A petition seeking to change this has been presented to Parliament, claiming clinical trials have shown “significant improvement” in health outcomes for people with the condition.
Cystic Fibrosis New Zealand chief executive Lisa Burns said the estimated annual cost of the drug was $330,000 excluding GST. One month’s worth would be about $27,500 plus GST.
Burns believed the donation was a “deliberate act of kindness”.
“But this shouldn’t need to happen — Trikafta should be funded by Pharmac and available to Kiwis in New Zealand as it is in more than 30 other countries.”
Pharmac has previously said it would like to fund Trikafta and was in talks with its manufacturer, but the cost was a barrier within the agency’s set funding limits.
Last month, Trish told the Rotorua Daily Post they were “desperate” to get their hands on Trikafta.
She lost her daughter, Santana Daniels, to cystic fibrosis in 2017.
“If we don’t get Trikafta I’m likely to lose my son,” Trish said through tears at the time.
Yesterday there was brighter energy in their living room.
OJ said he was asleep on Tuesday morning when his mother woke him up. “Mum just turns on the light and says, ‘look at this’, and then just throws the box over.
“I looked at it and it was Trikafta. I was still half asleep so I didn’t know what was happening . . . I wasn’t expecting it at all.”
Trish said it was a “routine” day where OJ had had a rough night trying to sleep. “We get a knock at the door . . . the courier’s just left a package on the doorstep.”
The package was addressed to OJ, but “I ripped it open because I needed to see if someone was just playing a joke . . . so I opened up the whole box and pulled out one of the wallets with the tablets in it and sure enough, it was Trikafta.
“I was jumping up and down — I couldn’t hold back.”
When OJ questioned who sent it, Trish said she had “no idea”.
“It’s anonymous — I don’t think they want us to know who it’s from and we’re going to respect their wishes for that. It was probably the most amazing thing . . . it was better than actually winning Lotto.
“It’s hard to believe that someone’s gone out of their way, this wonderful person who’s just gifted something that could literally change, if not save, his life.”
OJ said the drug would hopefully “lift [him] up and get [him] out of the critical zone”.
He said he had been “super unwell” for the past six weeks and “very out of breath”.
“More than usual — to the point where I’m just stuck in this chair, basically. I struggle to sleep due to not just only coughing but also breathing because when I lay flat, I can hardly breathe.”
A month’s worth of Trikafta would hopefully give him a “boost” with his energy levels and help him gain weight, Trish said.
“That will help him to keep fighting. A month is just enough to get him through because right now it’s better than doing nothing and going into hospital where the drugs aren’t working.”
Her son was “on a downhill spiral”. “His life is basically home, bed, bathroom, bed, bathroom.
“He’s 19 — he should be out there and enjoying life but instead he’s fighting for his life at home.”
But she still feared for his life. “We’re still a long way off — this has just given us a pause button from all the chaos cystic fibrosis causes. It’s a long journey and it’s a very difficult one.”
But even if they had a lifetime supply, she said, “our fight isn’t over . . . because we’ve still got 300-500 [people with cystic fibrosis] out there that also need it.”