# Accounting for a life

Dylan Booth bags a trout. PHOTOS: SUPPLIED
Being a child of maths teachers, I have been known to find solace and surety in numbers, writes Liz Breslin.

Liz Breslin
If something can be counted, I have reasoned, it counts. An account, too, can be a fact-based story. I wonder how you’ll think this all adds up?

22: the age of Dylan Booth, from Mosgiel.

57: the amount of kilograms he weighs at his heaviest.

10: the amount of hours he spends on overnight feeds.

100: the amount of millilitres an hour that can run through his gastro tube.

Mid-30-pound range: the estimated weight of the biggest rainbow trout Dylan ever caught. "I nearly broke a world record. I googled the IGFA world record trout: 21 pounds, but I’d already put it back."

12: the number of times Dylan went to hospital last year.

469,000: the cost, in New Zealand dollars, for one year’s supply of Trikafta, an unsubsidised drug, owned by Vertex Pharmaceuticals, a corrector, a beacon in the treatment of cystic fibrosis.

Dylan has cystic fibrosis (CF). He was diagnosed at birth thanks to a now-standard heel-prick test, designed by New Zealand’s own Sir Bob Elliot KNZM in the late 1970s.

30: one estimate of how many years, on average, Sir Bob Elliot’s test adds to the life expectancy of people with CF.

100: the percentage of effectiveness of that test.

37: the average life expectancy, in years, of people in New Zealand with CF.

6: the number of hours Dylan says it took Bella Powell to notice her breathing had improved with Trikafta. Bella Powell is the only person taking it in New Zealand at the moment, and that’s only possible because of Sir Bob Elliot.

about 100,000: the amount of dollars Sir Bob Elliot paid for the medication.

3: the amount of months of Trikafta that buys.

86: Sir Bob Elliot’s age and with all his years of medical experience he’s calling this "a miracle drug".

31,156: the dollars donated, at time of writing, to Bella’s givealittle campaign for more funding.

Priceless: breathing more easily. If you breathe more easily, you use less calories trying to breathe more easily. "One of the first things with Trikafta is you put weight on straight away," says Dylan. "It’s so hard for me to put on weight, I probably eat twice as much as the average person, but just don’t get anywhere. I’m not even fit enough to work, and I hate it."

503: the number of people in New Zealand with Cystic Fibrosis.

1361.11: the dollars a day it costs for one person’s supply of Trikafta tablets.

236 million: the dollars it would cost to fund every person with CF in NZ with Trikafta for one year.

An arm and a leg: how Dylan describes the charges for Trikafta.

4.163 billion: Vertex Pharmaceutical’s annual revenue for 2019 (up 36.59% from 2018). Their tagline is "the science of possibility".

Maisy Millwater would rather be out surfing.
It’s not possible, though, is it? asks Maisy Millwater, another one of the 503. "My number one question is, why was it made, why was it created if they’re going to charge such a rate. If you’ve got kids with CF, one of the parents is most likely not going to be able to work because they’re a carer, therefore you’re not going to have a normal family income, so why would they think that a person with CF would be able to fund that and that’s not everyone’s situation but that’s a common situation. It’s greed, and it is life or death, you know. It’s disappointing to see that humans are like that."

15 years and eight months: Maisy’s age, according to her most recent hospital bracelet.

4: the number of different hospitals she’s been admitted to in the past year.

8: the amount of times she’s been to those hospitals.

365: the number of days a year she’d like to go surfing.

3¾: the amount of minutes it takes for her to describe her daily medication routine.

It’s easy to get lost in the numbers. Saline 7%, 4ml water, 4ml saline, 8ml, every day, 6 sets of 10, 2 coughs, repeat. And at the end of the day, Dylan says, so much depends on how you add it up. "We should be looking at the benefits that the people are getting out of it, not looking at it like we’re getting a free ride. Look at it like it helps someone live a better life."