Health authorities are defending the level of care available in New Zealand for a little-known and debilitating illness, as yet another Kiwi eyes expensive surgery overseas.
Jemima Thompson is the third person to contact Newshub who has vascular compressions, a rare condition that causes excruciating pain during eating and drinking. Like those who have spoken before, she's hoping to make a $140,000 trip to Germany for specialist surgery because she can't get the help she desperately needs in Aotearoa.
Six months ago, Jemima's life turned upside down when she was hospitalised with extreme stomach pain. She went from being a regular teen who loved dancing, running and hanging out with her friends, to being confined to a bed with no energy.
While she can receive care for her vascular compressions in New Zealand, surgery is the only cure and it's not available here.
Te Whatu Ora Health New Zealand said Aotearoa's small population means highly specialist surgeries can't be supported here. Instead, a funding pool is in place to help Kiwis who need to travel overseas for treatment - but there's a tight set of criteria to meet to get the money.
"It can be challenging to balance local access to specialised care and centres of excellence for specialist care," national clinical director Dr Pete Watson said.
"However, there is good evidence to support that better patient outcomes are achieved with centralisation and higher patient volumes. This includes ensuring there are appropriate infrastructure and support services available."
If applications for the funding pool are successful, the full costs are covered. But in case their application is denied, Jemima and her family are raising thousands of dollars so she can get back to doing what she loves.
'I can't do anything that I love'
Jemima, 15, was a regular teen until she developed a horrendous stomachache in September and was hospitalised.
She fought with doctors for months to get an accurate diagnosis. But after nothing wrong was found in the first test came back, she feared that she and her mum, Rachel McKenna, may be seen as drug-seeking.
Jemima was dismissed as just having anxiety and it was even suggested that she had an eating disorder.
She was finally diagnosed with vascular compressions, but she's been living with Ehlers-Danlos syndrome her whole life. This genetic connective tissue disorder is likely what's behind her compressions.
The Hamiltonian also has a slew of other "life-limiting" health conditions. One of which is median arcuate ligament syndrome (MALS) pain, which she has been receiving treatment for along with her compressions.
But while the treatment helps, Jemima is desperate for a cure, which only comes from surgery.
Jemima decided to pursue surgery after speaking to other young Kiwis who've made the costly trip to Germany, including Taylor Doyle and Sarah Wills, both of whom have previously spoken to Newshub about their ordeals.
Rachel said the estimated cost of surgery alone is about $100,000. On top of that, they have to pay for flights, accommodation, and any other expenses while in Europe. It comes to an estimated total of $130,000 to $140,000.
But the cost is worth it for Jemima, who is constantly nauseous and in pain.
"At the moment, I can't do anything that I love. I'm stuck in a hospital bed and when I go home I will be mostly stuck to the house or to my bed at home," she told Newshub.
Being unable to eat also takes both a physical and mental toll as well.
"Food is such a massive social thing and I can't participate in that without making myself incredibly sick."
They are hoping to travel to Germany in the next few months for surgery and have set up a Givealittle page to help them manage the exorbitant cost. Rachel has also applied to Te Whatu Ora's high-cost treatment pool, which would cover full costs if their application is approved.
If they do get this funding, any excess funds raised through their Givealittle will be donated to help other Kiwis with similar conditions.
"I've gone through the criteria and I have filled out how she meets them… And, yeah, it completely fits. So, hopefully, that would be amazing," Rachel said.
The pair are under no illusions about the long-slog recovery from this surgery, but Jemima said anything is worth a try.
Te Whatu Ora responds
Te Whatu Ora national clinical director Dr Pete Watson said Jemima's story is very sad and they acknowledged the distress she's going through.
He said a range of vascular services are available in New Zealand, but realised some patients choose to go overseas for further treatment.
The high cost treatment pool is available for one-off treatments that are not funded by the public health system. Eligible medical treatments include ones that are only available outside New Zealand or that are only currently available outside the public health system, for example in private hospitals. Only people who are New Zealand citizens or permanent residents are considered for treatment funded under the pool.
It was established to recognise New Zealand doesn't have the capability or capacity to provide all treatments or the same technology and expertise that is available in other countries, Dr Watson said.
Asked whether training a New Zealand-based surgeon would be an option, he said Aotearoa's relatively small population means there are fewer instances of rare conditions and related treatments. This makes having a specialist surgeon tricky.
"Although we could have a clinician train to perform a specialist surgical treatment, unless the specialist clinician regularly performed sufficient volumes of the treatment they would be unable to maintain their skills and expertise," he said.
If the application is successful, full costs are covered.
Newshub also contacted Minister of Health Ayesha Verrall for comment, but her office did not respond.
What the future holds
Rachel wishes more people could get trained in vascular compression surgery and said even having a surgeon closer to home, such as in Australia, would be a great help.
She said joining an online forum opened her eyes to the full extent of the problem.
"We knew nothing about this as of September last year. [Now] we've come across a number of young women all around the same age, all who hit puberty and got these issues, all over the country," Rachel said.
"So if there was [a surgeon in New Zealand or Australia], then it would be amazing for the people who aren't in a position to travel."
The family recently had Taylor Doyle and her mother Zalie stay. Rachel was astounded to see the difference surgery had made for Taylor, given she was in a relatively similar position last year as Jemima is now.
"If you put Jemima and Taylor next to each other and you look at the difference, it's a life-changing, life-saving operation," Rachel said.
"We've been told she's not going to get better without it... We'll get the surgery if that's what we have to do."
