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All kinds of good reasons

In August 2020, I wrote a column about Dylan Booth and Maisy Millwater, two of the teens in Otago who are living with cystic fibrosis. In this document, I used numbers to show what I struggled to do with words. Since then, the numbers have changed for the better for Dylan, and no, I don’t mean he improved his record for catching a 30-pound trout. One of the numbers that has changed is that his lung function has fallen below a magic threshold of around 20%, his hospital visits per year are over something like four. He was sick enough to be on the list for lung transplants, but probably too sick to have survived a transplant. His medical team and family therefore attempted an application for Trikafta, the drug that was also listed in this previous column. He received Trikafta for compassionate reasons.

Here are some of the numbers that followed.

2 The number of people allowed in a hospital elevator.

4 The number of stairs Dylan took instead of taking the elevator on the fourth day after getting Trikafta.

7 The number of flights of stairs he ran back up, when he realized he was running, to verify that it was really happening.

30 The number of countries in the world in which Trikafta is financed.

60 The weight in kilograms Dylan thought he would be stuck at, even with his best efforts at nighttime feedings, etc.

68 The number of days Dylan has left in the 75 Hard workout challenge he’s doing with his girlfriend.

70 The weight in kilograms that Dylan now hopes to achieve.

Two pills a day. One in the morning, one in the evening. When asked where he would be without Trikafta, Dylan replies, “I would be dead.” He’s frustrated that “we have to wait for things to get really bad until we get this. Like I don’t know what’s more important than health. And it’s also sanity to be at the hospital and not being able to work or anything really.”

Australia has just funded Trikafta, and Cystic Fibrosis NZ is urging Pharmac to negotiate with Vertex (the manufacturers) to agree a ‘fair and reasonable’ price for what Dylan calls ‘literally a magic drug’. And they want the government to fund this for the 388 New Zealanders who would benefit. “Because if Australia can,” Dylan says, “I’d like to think we can too. Like we’re so good at being the world leader in certain things and we could do that.”

More numbers. Cystic fibrosis is sometimes referred to as “65 roses” thanks to the cute mispronunciations of a 4-year-old child in 1965. People with cystic fibrosis and petition supporters who

43,000 people signed up, stood on rose-lined steps to represent New Zealanders who cannot or afford access to Trikafta.

I want to use the word “again” here. Who can’t get Trikafta yet. Hoping that will happen.

Two of these roses are for Maisy Millwater and her brother Stan.

A few figures on Maisy.

0 The energy she has to do just about anything other than going to work and coming home.

3 The number of months until she can get her full licence.

10 The percentage of her body weight she has lost since the last time we did this numbers story.

20-45 The number of hours she works each week.

75 The amount of meals she prepares during an average shift.

Lots The number of new plants she has purchased.

I ask her how she feels about not having Trikafta.

“In a way, it’s fair and I’m not there yet, so I’m okay with that for now, but I don’t think it’s right to hide it from people,” says -she.

I don’t like the word “again” here. It speaks to Maisy’s 100% certainty of declining health, when we know there is another way. Of Dylan, she says “He’s very lucky, but he shouldn’t have been so lucky.” And then we talk about cats.