Any number of good reasons

In August 2020, I wrote a column about Dylan Booth and Maisy Millwater, two of the teenagers in Otago who are living with cystic fibrosis. In it, I used numbers to show what I struggled to with words.

Since then the numbers have changed for the better for Dylan, and no I don’t mean that he bettered his record for catching a 30-something pound trout.

One of the numbers that changed was that his lung function dropped below a magic threshold of something like 20%, his hospital visits per year went above something like four. He was sick enough to have made it on to the lung transplant list, but probably too sick to have survived a transplant.

So his medical team and his family chanced an application for Trikafta, the drug that also featured in that earlier column. He was given Trikafta on compassionate grounds.

Here are some of the numbers that followed.

• 2 - The amount of people allowed in a lift in the hospital.

• 4 - The number of flights of stairs Dylan ran down rather than take the lift on the fourth day after getting Trikafta.

• 7 - The number of flights of stairs he ran back up, when he realised he was running, to check that this was really happening.

• 31 - The number of countries in the world Trikafta is funded in.

• 60 - The weight in kilograms Dylan thought he would be stuck at, even with his very best efforts of overnight feeds etc.

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

• 70 The weight in kilograms Dylan now hopes to reach.

Three pills a day. Two in the morning, one in the evening. When asked about where he’d be without Trikafta, Dylan says, "I’d be dead." He’s frustrated that "we have to wait until things get really bad until we get this. Like I don’t know what is more important than health. And it’s the mental health too of being in the hospital and not being able to work or anything really."

Australia just funded Trikafta, and Cystic Fibrosis NZ is urgently 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," says Dylan, "I’d like to think we can too. Like we’re being so good at being world leading in some things and we could do this."

More numbers. Cystic Fibrosis is sometimes characterised as ‘65 roses’ thanks to the cute mispronunciations of a 4-year-old in 1965. People with CF, and supporters of the petition that 43,000 people signed, stood on steps lined with roses to represent those New Zealanders who cannot get, or afford to get, access to Trikafta.

I want to use the word ‘yet’ here. Who can’t get Trikafta yet. In hope that it will happen.

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

Some numbers about Maisy.

• 0 - The energy she has to do pretty much anything other than go to work and come home.

• 3 - The number of months until she can take her full licence.

• 10 - The percentage of her body weight she’s lost since we last did this numbers thing.

• 20 to 45 - The amount of hours she’s working every week.

• 75 - The amount of meals she makes in an average shift.

• Lots - The number of new plants she’s bought.

I ask her how she feels about not having Trikafta.

"In some ways it is fair and I’m not at that point yet so I’m OK with it at the moment but I don’t think it’s OK to keep it from people," she says.

I don’t like the word ‘yet’ here. It speaks of Maisy’s 100% certainty of a decline in her health, when we know there’s another way. About Dylan, she says "He’s very lucky, but he shouldn’t have had to be lucky."

And then we talk about cats.