The Ministry of Health is defending its decision to decline funding for a three-year-old Hamilton boy who needs a heart transplant.
Chase Porter was born with Barth Syndrome, an incredibly rare condition that only about 200 people worldwide have been diagnosed with. It causes him to have low energy, be prone to infections, and has resulted in a major heart problem known as cardiomyopathy.
He has survived so far with daily heart medications, but without a heart transplant, he will die.
Chase has to travel to Australia to get a new heart, because organ donation rates in New Zealand are chronically low.
In 2016, the Ministry of Health approved and paid for a two-year-old Wellington girl to travel to Australia for a heart transplant. She was New Zealand's youngest-ever transplant recipient.
So in April, Chase's doctors approved and submitted an application to the Ministry of Health for funding for him to travel to Australia for a transplant.
"[The doctors] said to us they didn't see it not being approved. They didn't see there being an issue," Chase's mother Kelsi said.
Research on Barth Syndrome is in its infancy, but the medical director for pediatric heart failure and heart transplant programs at Pittsburgh University's Children's Hospital in the United States, Dr Brian Feingold, will soon publish the world's first study into how children with Barth Syndrome fare after a heart transplant.
"It looks like these individuals do just as well from a survival standpoint and from a major complication standpoint," Dr Feingold said.
"It seems like, from that analysis, that compared to patients without Barth Syndrome who have dilated cardiomyopathy, that Barth Syndrome individuals, on those metrics, do just as well."
Despite a seemingly good chance, last month the ministry declined Chase's application. In a one-page letter, it said the procedure was too expensive. No other solutions were proposed.
His parents say they contacted the ministry to ask if they could come to an alternative funding agreement, but "it's been pretty hard to get a reply", his mother Kelsi said.
After questions from Newshub, Dr Andrew Simpson, the Ministry of Health's chief medical officer said, "the decision to decline the application... was one that was extremely difficult to make, however a significant issue was the very high cost of the proposed treatment".
Dr Simpson said Chase's treatment was estimated to cost more than twice the annual $2.183 million budget allocated for complex overseas treatments - the High-Cost Treatment Pool.
In other words, the ministry says Chase's new heart would cost more than $4.36 million.
But a 2018 study from Melbourne's Royal Children's Hospital Melbourne found the average cost of a paediatric heart transplant in Australia is around $500,000 - or eight times less than the ministry's estimate.
When asked for a breakdown of the more than $4 million estimate, the ministry refused to provide one: "The quote provided was by an overseas hospital. This was based on their treatment prices and we are unable to release them due to commercial sensitivity," Dr Simpson said.
"We would like to clarify that the costs include multi-month pre-transplant and post-transplant inpatient admission including intensive care, theatre admission and the transplant itself, case assessment and management, plus a contingency," Dr Simpson said.
Chase's parents want to know why the ministry has been able to send a child to Australia for a heart transplant before, but will not send their son.
"What's the issue this time? You know? What's the difference? They've done it before. It was successful," Kelsi Porter said.
They have met with their local MP, Labour's Jamie Strange, and have engaged a lawyer for an appeal.
"We've got letters of support from Chase's medical team and support services. And we're going to appeal the decision," Kelsi Porter said.
The ministry says it is prepared to sit down with the Porters: "We are very sympathetic to the family and understand this is a very difficult situation. We would be open to meeting with the family to discuss this further," Dr Simpson said.
Kelsi and Andrew Porter are hoping Chase lives long enough to see the appeal finished.
"It's really frustrating because we've had eight months, but we might not get another eight months," Kelsi said.
"[Chase] could be taken out by a cardiac arrest or heart failure, at any time and our lives could change any day."
A Givealittle page has been set up for Chase by a family friend.
The High-Cost Treatment Pool
The Ministry of Health says treatments approved under the High-Cost Treatment Pool in the 2019/20 year included cancer treatments, cardiovascular treatments and transplants.
A total of 18 applications were received. Ten were approved, four were declined, one was cancelled, and three are awaiting further information or a decision.