Sonja Reid's 5-year-old son, James, will travel from Papamoa to the United States next month for surgery to help improve his quality of life.
Sonja Reid's 5-year-old son, James, will travel from Papamoa to the United States next month for surgery to help improve his quality of life.
When life hands you a rare, life-threatening health condition, some Kiwis try to fix it -- overseas. Bay of Plenty residents seek treatment abroad to improve or prolong their lives, or the lives of their children. Bay of Plenty Times Weekend reporter Dawn Picken spoke with patients, parents, friends and doctors to learn why people stretch finances, stress relationships and spend time - for treatment offshore.
John Nicholls smiles for a photo dated July 31 from his wheelchair outside the International Neuroscience Institute (INI) in Hanover, Germany. The shiny, silver building resembles Wellington's Beehive, with multiple levels and a curved exterior. But Hanover is more than 18,000km from New Zealand.
It's there, in Germany, that 52-year-old John had surgery last month to remove a malignant brain tumour called glioblastoma multiforme (GBM).
GBM is the most common and most aggressive malignant primary brain tumour. Median patient survival is 12 to 16 months, and according to Mayo Clinic's website, recurrent disease has a dismal prognosis. John tells the Bay of Plenty Times Weekend via email (he doesn't have a cellphone plan in Europe) about his odyssey from his home in Whakatane, to Tauranga's cancer centre, to Germany's INI, in an attempt to beat the odds.
John Nicholls shows off his pre-operative wardrobe at the International Neuroscience Institute in Germany.
"I was diagnosed in October, two weeks after mixing my words up followed by a seizure. No prior warning. We were told in New Zealand the tumour was inoperable but then heard from a friend about a place in Germany. So we looked it up and we were able to send my medical records.
"I'm sure there were other places but it is pretty impossible trying to find them on your own without help, especially when you don't have a lot of time. We have since been told about a surgeon in Sydney. Bit late now, though it may not have been cheaper."
John's wife, Karen, says, also via email, the operation and hospital stay cost $83,000. Return air tickets alone cost $5500. Karen says John had the original tumour removed at Waikato, followed by 45 days of radiation and chemotherapy at the Kathleen Kilgour Centre in Tauranga.
"When the new tumour appeared they said there were no more options left. However, they did recommend a private oncologist in Hamilton with a more holistic approach. She could offer a couple more chemo options that are unfunded by the government. I think they were $3000 a month."
Karen says the couple was told the treatment might only offer a couple more weeks or months of life. So the family went on holiday to Europe, and approached the INI clinic before returning to New Zealand.
"Two days before flying home we had an email to say they would be happy to operate."
Karen says aside from stress, boredom is the hardest part. "John has to rest quite a bit and cannot be left alone at this stage of recovery, so we spend a lot of time cooped up in our room. John also can't travel for too long in the car so we always have to look for a change of scenery nearby."
John is one of those annoying people who are just so blimmin' nice...He is kind, considerate, cheerful -- how his wife puts up with him I will never know.
The family drove several hours to Denmark to sightsee after John was discharged from hospital. They plan to return to New Zealand next week.
Family friend Sandra Batcheldor set up a Givealittle page, which has raised just over $8400. Sandra says John's situation shows "just how tenuous a grip we have on life".
"It's a real shock. You don't expect it's going to happen to anyone you know and love."
John says he used his life insurance to pay for the operation, leaving his family with "very little". Also, his teenage children missed a lot of school, "...though in perspective that's not a big deal".
John works as a copy shop technician. His wife is a stay-at-home mum who sells books online. Sandra wrote on her fundraising web page: "John is one of those annoying people who are just so blimmin' nice...He is kind, considerate, cheerful -- how his wife puts up with him I will never know."
James Reid had his first week of school at Te Akau Ki Papamoa Primary. Photo/John Borren
The Nicholls are sharing their European medical trip with friends and family via Facebook. A photo posted on the site shows John before the operation wearing compression tights and sunglasses that look like playing cards with diamond-shaped eyes. John wrote: "You really have to forget about pride and dignity in hospitals. I was so happy when I got a room with a bathroom. Using those bottles is not pleasant."
Fresh hope overshadows hospital indignities. John says via email: "Tumour completely removed but the nature of this tumour is that it pretty much always grows back, so it has mainly bought time and more time with lack of symptoms. If [I'm] really lucky it won't grow back. I made the choice to spend more time with my family and not give up ... the surgeons in Germany couldn't believe that it wasn't removed in New Zealand as it was a straightforward surgery at that point. They asked me if we thought it was a money issue, not wanting to remove a tumour that would probably grow back.
"Also that would explain why they saw so many New Zealanders at their clinic."
Staff at INI in Hanover responded to a request by the Bay of Plenty Times Weekend for the number of Kiwis seen at their facility with a brief email: "Thank you for your request. Data privacy is one of the main pillars of health care. Please note that for this reason we never provide any data to external persons."
Of course you're going to go there and try. No one else is really going to help us. We've got to help ourselves and help our son.
Dr John Windsor, professor of surgery and director of surgical research at the University of Auckland School of Medicine (who is not connected with patients in this story), says doctors are cost-conscious, "but when a surgeon is faced with an individual patient, the cost issue doesn't rear its head. It's what's best for the patient".
Dr Windsor says there's always a risk/benefit ratio with a recurring tumour. "Will you get an extra three months of life? What about six months? You have to have that conversation at the individual patient level and discussions about money at the population-based level."
Dr Windsor says countries with larger populations offer more options for clinical trials. Still, the surgeon says he's concerned when patients go overseas. "It may be related to the fact public healthcare has been downgraded in their minds. Having travelled the world and worked in many places [including the United States], New Zealand healthcare is brilliant and cheap.
"There will always be cases where someone wants access to something we can't provide. Sometimes, we're at the cutting edge, but often we watch and see how things develop, then take them on board without the mistake of going down an avenue where something is not effective in the end."
The surgeon encourages patients and their families to get second opinions inside the country before going overseas, and even then, to continue working with their own physicians. "Medical care in Tauranga is great, but it's not the largest place. Work with the local doctors to seek an overseas opinion, rather than do things independently. Plenty of oncologist surgeons are willing to explore options."
We asked the Bay of Plenty District Health Board (BOPDHB) how oncologists work with patients who seek treatment abroad. A written statement from Dr Richard North says: "Medical oncologists in the Bay of Plenty are as supportive as possible to patients who wish to seek treatment overseas and this in no way impacts on their access to publicly-funded treatments or subsequent follow-up locally."
BOPDHB general manager planning and funding Simon Everitt says: "District Health Boards are bound by a Service Coverage Schedule issued by the Ministry of Health which sets out the national minima for the range and nature of health services to be funded by DHBs. Decisions about what gets funded are strongly influenced by this schedule.
"Often people travel overseas for treatment because certain services are not available in New Zealand, irrespective of the funding involved. In these instances, it is possible to apply for funding from a high-cost treatment pool to cover the cost of treatment. The high-cost treatment pool (HCTP) is part of a Ministry of Health process, it is not DHB-led."
However, Ministry of Health chief medical officer Dr Don Mackie said in a written statement: "DHBs can also send individuals overseas for treatment ...the population-based funding formula which funds DHBs does not preclude sending someone overseas for treatment."
The Ministry has no data on the number of New Zealanders choosing care overseas. Dr Mackie said New Zealand provides a good standard of healthcare, ranking favourably in international comparisons, particularly when relative spending on health is taken into account. "It is not surprising that New Zealand does not offer every possible treatment, given its small population."
Dr Mackie says the question of why a particular operation is not available here is usually about numbers of potential cases and available expertise. "Even worldwide, some procedures are rarely performed."
When asked about New Zealand's high-cost treatment pool, Dr Windsor said: "As a senior surgeon in Auckland, I'm not aware of that fund ... I didn't know the Ministry had a pool of money. It would make sense to have a discretionary fund. That fund sounds like an admission we can't provide everything to everybody."
John Nicholls brought his family from Bay of Plenty to Hanover, Germany for a chance to prolong his life after being treated for aggressive brain cancer in Tauranga.
Papamoa mum Sonja Reid has worked with her family and community to raise more than $100,000 so her son can have potentially life-improving surgery in the US. Sonja says she, too, was unaware of the government's high-cost treatment pool.
She fears the process might take up time the family doesn't have. Ministry of Health senior media adviser Kevin McCarthy says the HCTP, "has a required turnaround for a completed application of three weeks from receipt of form and once any queries have been fully answered". In urgent cases, the Ministry prioritises for an earlier turnaround. Sonja's 5-year-old son, James, has spastic quadriplegia cerebral palsy. She says the operation he needs is only available in the US, and Kiwi doctors take a cautious approach to offshore treatments.
"They're kind of non-committal, they don't really know. There isn't enough research done in New Zealand on these types of procedures, so they don't know enough to comment. Generally, the New Zealand medical profession frowns upon it; they'll advise you against it."
The Reid family has organised for James to have an operation at Overlook Hospital in New Jersey. Sonja says James must wear a cast from knee to ankle for a week following surgery.
JAMES also has epilepsy and hydrocephalus (water on the brain). Sonja says her son can't sit, stand, crawl or walk unaided; he relies on a wheelchair and his parents do lots of lifting. They're hoping the surgery, called selective percutaneous mysofascial lengthening, will stop further contractures (stiffness of muscles and tendons) and avoid permanent muscle shortening.
But it's a long road to the American operating theatre -- not just the 14,088km from Tauranga to New Jersey. It's also months of fundraising -- promoting and attending events, followed by three months abroad for James. His parents plan to take turns caring for him: dad, Don, will fly to the States on September 18. Sonja will take over the last month, when James has physical therapy in Croatia. "We decided, after seeing on a Facebook support network that an Australian family went to Croatia for physical therapy. Therapy in the US is about $700 for an hour. In Croatia, it's maybe three hours for $200."
Sonja says just living day-to-day with James, while also caring for his 2-year-old sister, Lily, can be a struggle. She can't recall the last time she and her husband went on a date, they both get tired from picking up James and now the spectre of splitting the family for treatment hangs over them.
Still, she says the chance to give her son better health and mobility is worth the sacrifice: "It's gonna be really hard, really tough for Lily, too -- her big brother and dad will be away three months.
"Of course you're going to go there and try. No one else is really going to help us. We've got to help ourselves and help our son."
The silver lining is knowing how many other people are willing to step up. "People who don't even know me. That kind of spirit blows you away. We'll get there. It's a new adventure, and we've got to think positively."
