Opinion: Jo Raphael: Trikafta funding one step closer, now let's get it over the line

OJ Daniels, holding the life-changing drug Trikafta, used to wonder what it was like to breathe normally, writes Jo Raphael. Photo / NZME

OPINION

Taxes. Love them, or hate them, for a functioning and prosperous society, they are a necessity.

We all pay them and they're collected in a variety of ways which means very few of us can get away without something, through our daily transactions, going to the communal kitty.

Even if you draw on benefits including retirement and veterans pensions - you can't escape the taxman. He's there, one step behind, with his hand out.

There has been some quite vocal outrage in the past when those in charge of spending our public money have been caught using it in ways that seem to be inappropriate.

The most recent one is the eye-watering $51 million spent on consultation for the now-scrapped Auckland cycle bridge.

This is public money and every dollar must be spent wisely, and this sometimes does not happen, whether it be through expensive consultation or dubious government spending.

But there is one thing I'm glad to see my taxpayer dollar go towards - and that's the funding of Trikafta.

The drug has been labelled a "miracle" by cystic fibrosis sufferers who have had experience using it.

It works by helping to thin mucus, stopping it from blocking the body's organs.

It normally costs $330,000 per year - unfunded. This expense would be prohibitive for most sufferers and their families.

This week, Pharmac said it had received a clinical recommendation that Trikafta should be funded for people aged 6 and older.

Pharmac had already re-ranked Trikafta on its Options for Investment list following updated advice from its Pharmacology and Therapeutics Advisory Committee.

This is fantastic news and means the drug is one step closer to becoming fully funded.

While the drug's manufacturer, Vertex, has a programme where patients can qualify for free access, often they focus on "the most critically ill" so this is not an option for most sufferers deemed not sick enough.

However, Vertex recently approved free access for Rotorua 19-year-old OJ Daniels - a decision that is, quite literally, life-changing for him.

Such was the desperation of his mum, Trish, she didn't expect him to live to his 21st. She would know - she's already suffered the loss of her daughter, Santana, from the same disease. She was 21.

"He is dying," Trish told NZME at the time.

Now, on Trikafta, we have the privilege of witnessing OJ's life take off. The sky is his limit.

When we caught up with him he said: "I was bouncing off the walls ... I wanted to get out right there and then out of hospital because I had too much energy."

Whakatane's Troy Watson and Tauranga's Charlie Ford are in the same boat - both desperate for funding for this drug.

This is what I want to see for all people with cystic fibrosis. And taxpayer dollars should be used to fund it.

Pharmac's budget boost of $191 million, allocated over two years allows it the opportunity to seriously consider publicly funding Trikafta. It was wonderful to hear this week that it was taking a step in the right direction.

The ball is now in Pharmac's court.

It's time to get this sorted. Pharmac needs to push this over the line as quickly as possible and provide relief for these families.