By Amani Sadique
Young New Zealanders who are suffering from Abdominal Vascular Compressions Syndromes are feeling a lack of support from Aotearoa's health system and are having to resort to fundraising pages to be able to afford the trip overseas, where the life-changing treatment is offered.
It was August 2021 when 19-year-old Alice Williams noticed her health starting to deteriorate. She spent months in and out of hospital for tests and monitoring with no answers.
During this time, she lost 27 kilograms and had to complete her last year of high school online due to being admitted to the hospital for weeks.
She was reliant on a nasojejunal feeding tube as any oral intake caused intense abdominal pain and nausea, and she was bedridden due to lack of energy, malnourishment and severe pain.
"We tried to get a diagnosis and advice in the public system but were constantly pushed back and told that vascular compressions weren't the cause of my symptoms," Williams told RNZ.
Abdominal Vascular Compression Syndrome (AVCS) occurs when abdominal blood vessels are compressed by surrounding structures or when abdominal organs are compressed by nearby blood vessels. The specific symptoms experienced can vary depending on which structures are affected.
Williams was told by healthcare professionals that she had an eating disorder, that it was a psychological issue and a gut-brain axis issue.
"This was really tough to hear because it made me feel crazy and like it was all in my head despite clear statements and scans from a vascular surgeon in Hamilton, and two doctors in Germany stating that I was clearly suffering from abdominal vascular compressions," Williams said.
It took two and a half years for Williams to get diagnosed with AVCS.
Williams had to go through costly private healthcare to get the final diagnosis, which was from vascular surgeon Chris Holdaway in Waikato.
She was then told that the only surgery option available was in Germany.
"Even once I had gotten a diagnosis of multiple abdominal vascular compressions, certain doctors in the public system were not supportive of the diagnosis or the decision to go to Germany for surgery, saying it wasn't the cause of my symptoms despite the doctors in Germany saying otherwise.
"This was tough and frustrating to hear as we just wanted recognition but instead it made us question whether we were doing the right thing."
This experience is not uncommon among AVCS sufferers.
Julia Choquette and her family are waiting for enough money from fundraising to be able to afford the trip to Germany for surgery. Photo: Supplied
'We wish it was easier to get diagnosed and treated' - mother
Julia Choquette, who is 15 years old, is another AVCS sufferer who cannot eat or drink and suffers from vomiting, pain and other symptoms.
She is currently waiting to receive enough money from fundraising to be able to afford the trip to Germany for surgery.
Babette Puetz, Julia's mum, told RNZ she thought Aotearoa's health system was underfunded and lacking pathways for the diagnosis and treatment of rare diseases.
"We felt very left alone by the public health system, having to do our own research on where to find help for our very sick daughter while fearing for her life. It has been terrifying for our family to watch our daughter suffer from malnutrition, dehydration, medical instability and other horrific symptoms.
"We wish it were easier to get diagnosed and treated for rare conditions like AVCS in Aotearoa. We needed to access private health care, out of town, for Julia to get diagnosed. This is very costly and not possible for every family," Puetz said.
Public funding for sufferers to be able to afford overseas surgery is scarce.
Te Whatu Ora has said they recognised that Aotearoa "does not have the capability or capacity to provide all treatment or the same technology and expertise for all conditions that are available in other countries," which led them to establish the High Cost Treatment Pool (HCTP).]
"The HCTP is money set aside for one-off treatments not otherwise funded by the public health system. Treatment that may be considered includes medical treatment that is only available outside New Zealand or treatment that is only currently available outside the public health system, for example in private hospitals. Only people who are New Zealand citizens or permanent residents may be considered for treatment funded under the HCTP," a Te Whatu Ora spokesperson said.
Despite this, Puetz said that to her knowledge, only one family was supported by this fund for this particular surgery in April 2023.
"Since then, no family seems to have had any success with their applications to get this surgery funded. As there is no other source of financial support, we need to fundraise to meet the astronomical costs involved."
Williams tried to access the HCTP but was told she did not meet the criteria due to the surgery being deemed 'experimental' despite a large number of success stories.
"Accessing such treatment should not be a matter of being lucky enough to own the funds or being able to fundraise successfully but should be available to all Kiwi patients who need it. Currently, more than 10 other Kiwi patients besides Julia are fundraising for decompression surgery or to recover the costs," Puetz said.
NZ medical staff lack knowledge, sufferer says
Williams described her experience as a 'real eye opener' into Aotearoa's health system.
"I experienced a lot of traumatic experiences in the hospital with doctors, nurses and my overall poor health and I don't know anyone that hasn't experienced some form of trauma on their journeys which is not something anyone should have to experience.
"I think a lot if it comes down to a lack of understanding and knowledge regarding the conditions and treatment so a good start would be more education on the condition, treatment options and how it affects us so that people can gain the treatment they need without having to put up a constant fight with the health system."
Since being back in Aotearoa post-surgery, Williams still feels a lack of support.
"Apart from my GP and physio, I haven't seen or heard from any doctors in the public system. We feel a bit in the dark and a bit alone on where to go next. We thought that maybe after having the surgery more doctors would take on my care, however, it feels like the opposite. Instead, my only point of call is to go down to see the vascular surgeon in Hamilton privately which isn't ideal."
Chris Holdaway has been to Germany to observe the surgery and has been battling with the health system to introduce it to Aotearoa, but his attempts have been unsuccessful.
Te Whatu Ora told RNZ: "New Zealand has a relatively small population and hence has small volumes of rare conditions and related treatments, we also acknowledge that some patients who have problems which may arise from vascular compression complications may seek overseas treatment, rather than only accessing those which are available here."
There are currently 13 Givealittle pages active by people who are hoping to be able to fundraise the trip to Germany to receive surgery for vascular compressions.
Te Whatu Ora was asked how long it would be until sufferers did not have to travel overseas for the surgery but it did not respond.
A Givealittle page set up to help support Julia's trip has so far raised nearly $90,000 of its $140,000 goal.
