OPINION: Imagine you're slowly going blind.
You can't see the stars, then people's faces start to fade and, before long, the whole world goes dark.
Now, imagine some brand-new scientific magic was invented that could save your sight.
And that new magic treatment is something called gene therapy. It's amazing.
It can fix problems we're born with. It's called Luxturna.
The problem is, it's sold by a big US drug company called Novartis and it costs $1.5 million to do both eyes - $1.5m to save someone from going blind.
And in the same old sad story - Pharmac doesn't fund Luxturna, while other countries, like Australia, do.
This is the case for three Kiwis, three people who have a rare genetic retinal disease.
One of those people is Rana-Maree Brown - an amazing single mum from Hawke's Bay who battles the system every day so she can take her children to and from school and karate lessons, feed, clothe and play with them.
She can't see her daughters' faces properly; she needs their help to get around. And she's making do but, soon, she'll be completely blind.
"If Pharmac would help... it would change my complete world," she said.
Flynn Maguire is another Kiwi in need of Luxturna. He's an 18-year-old Southland boy - living at home, losing his sight bit by bit, day by day.
His mother, Debra Young, was in tears as she told Paddy Gower Has Issues how desperately they want the treatment.
"It's frustrating because there is a solution to his problem and we can see it, but we just can't reach out and grab it. It's right there in front of us."
My own story
I've had my own problems with eyesight. And the possibility of going blind is something I've had to confront. I've had three detached retinas - you've only got two, so one of them detached twice.
That's how I nearly went blind.
I've got Glaucoma, that slowly steals your sight. I have to take medicine every day to stop that.
And I'm getting old, so now my reading eyesight is going.
All this means I am truly afraid of going blind. And to know there are people worse off than me, with a cure they can't access, is devastating.
The solution
Around the world, there are dozens of gene therapy treatments being trialed and tested for eyesight alone. Huge leaps in modern medicine, scientific breakthroughs on the verge of being broken.
Luxturna is the first one to make it. It's used for people with a rare and very specific genetic retinal disease: Lebel congenital amaurosis with the mutated gene RPE65.
It's a condition people, like Rana and Flynn, are born with. And over time their sight gradually deteriorates.
But, if they get treated early enough with Luxturna, their sight can be both improved and saved from getting any worse.
When the Food and Drug Administration in the US approved Luxturna in 2017, it was heralded as a world first, a landmark in the field of gene therapy. Since then, other countries have started using it; the UK, Canada, Australia.
In New Zealand, Medsafe has approved it. But, earlier this year, Pharmac deferred a decision to fund it, citing concerns the effectiveness of the drug wasn't long lasting.
But surgeons overseas, and their many patients, will tell you otherwise.
Sydney-based eye surgeon Matthew Simunovic has treated nine patients. He told PGHI the treatment has worked well.
"Their improvement to light sensitivity is improved by close to 100-fold - that's a phenomenal improvement," he said.
"It's not my place to tell countries how to partition their health care spending, however I think it's pretty clear that this treatment is effective."
I went to Pharmac to ask them if and when they'll reconsider a decision on funding the drug.
Pharmac chief medical officer David Hughes said he understands how difficult it must be for people like Rana and Flynn.
"To know that a potentially life changing medicine is available overseas. It's available in Britain, it's available in Australia and it just seems just out of reach here."
But he's committed to reviewing Pharmac's decision in the first half of 2024.
"This isn't a no. This is a pause while we look for more information," he said.
"Is this a life changing medicine? If it is, it needs to demonstrate that... show us the data. Share it with us. We'll share it with our experts and we can move on."
PGHI contacted the drug company that has the license for Luxturna - Novartis - and said within the past couple of weeks Pharmac has contacted them asking for more information. PGHI also asked if there were any compassionate grounds, for people like Rana and Flynn.
It was a no.
So Novartis won't help them but Pharmac can make this happen.
There is hope - Pharmac needs to turn that hope into a reality.
It might seem expensive for the taxpayer. But not as expensive as these people going blind. Which they will.
There are bigger issues here too.
We're so desperately slow when it comes to funding these life-changing new drugs like Gene Therapies. And we need to better understand blindness in this country.
But for now it's about Rana and Flynn, because for them every day matters. Every day their blindness gets worse,
Patrick Gower hosts Paddy Gower Has Issues - watch it on Three or ThreeNow.
