One cancer patient’s survival chances have been cut dramatically after a six-month wait for a bone marrow transplant.
He is now having to repeat a gruelling – and expensive – chemotherapy to get back to the stage he was at the start of the year, so he can undergo the procedure.
According to advocates, increasing wait times for transplants are putting lives at risk, and also costing the health system more.
Alex* was diagnosed with an aggressive blood cancer just over a year ago and given a 50/50 chance of survival.
That was sobering news for the 40-something father-of-one, a relative of an RNZ staff member.
But more bad news came just before Christmas, when doctors told him his only option was a bone marrow transplant to replace his cancer-ridden immune system with someone else’s.
For the first time, the phrase “wait list” came up.
“Up until this point I hadn’t had to wait for anything really – we were told at that stage it was July, so basically six months of waiting ahead of us.
“They also told us it was bad for my prognosis to wait.”
Best practice internationally is for bone marrow transplants to happen within four to six weeks.
When his medical team consulted overseas colleagues, they had little advice to offer because their patients do not wait half a year for treatment.
Alex’s doctors put him on a maintenance regime of chemotherapy and immunotherapy to keep the cancer at bay while he waited.
Unfortunately, just days before the transplant was due to go ahead in July, a scan showed the cancer had rebounded.
“I was no longer in remission, so I was no longer eligible to have a transplant. There was just too much cancer for the transplant to work.”
After a painful few days in limbo, doctors came up with a plan: more intensive chemotherapy.
Previously, he had been told that his chance of getting through the bone marrow transplant and achieving a cure was about 33%.
This time, he was told he had a 50/50 chance just to get into remission.
Alex knew he was starting further back than square one because cancer is “wily” and learns to get around drugs.
“Plus I’m going into the transplant a lot sicker and thinner, having used up more of the drugs to get into remission.
“They haven’t said this, but I can’t help but feel that we must be getting down near single digits in terms of survival probability.”
He was scheduled for a bone marrow transplant in September, pending another scan.
“Something has shifted in my head from having a 33% chance of survival.
“I can say, ‘I’ve got a fair shot at this, it might be a bit stacked against me’, but I can say to my son, ‘I’ll see you when I get out of hospital’ – to really in a lot of ways feeling like it’s goodbye.
“Or there’s a high enough chance that it’s the last time I’ll see my family when I go in to get the process done.”
Apart from the personal cost to him and his family, the extra treatment and hospital time had cost the health system extra, he said.
All the drugs, tests, scans and specialist appointments he had had while waiting – plus the weeks of extra treatment to get him into remission again – could have been avoided if he had been able to have the transplant at the start of the year, he said.
Even after he had the transplant, he would still need to spend at least a month in hospital.
“We’re chewing up capacity that could have got someone else a bone marrow transplant earlier.
“So someone else’s family – at least one other person’s – is probably navigating the fact right now that they’ve been delayed a few weeks. And that’s worse for their outcome – they might be that close to coming out of remission and about to get the bad news that I got.
“I just can’t abide the wastage. If you’re going to spend the money, get the result. If you’re not going to spend the money, that’s bad enough. But to spend the money and not get the result, that’s barmy.”
Delays ‘unacceptable’
In response to Alex’s formal complaint, Auckland City Hospital told him it recognised such delays were “unacceptable”, particularly for people with a life-threatening illness.
“We share your concern regarding the potential negative effects of prolonged wait times on patient outcomes and overall well-being.”
It had escalated concerns within Health New Zealand and was waiting on a response to its comprehensive business case to boost capacity to treat more patients.
Meanwhile, Auckland was working with Te Ahu o Te Kahu (Cancer Control Agency) to develop a national framework for timely delivery of stem cell transplants nationwide.
The number of transplants carried out increased 24% between 2017 and 2021, but the number of referrals grew even faster – driven by both an ageing population, but also advances in medicine.
Global databases have made it easier to find donors for patients, and more people are clinically able to have transplants.
Cancer Control Agency regional manager Cushla Lucas said demand was projected to jump by another 40% to 50% by 2030.
Patients having autologous transplants – using their own stem cells – were mostly getting them within the recommended time frame of four to six weeks.
However, those needing donor transplants were not.
“We’re very concerned that people aren’t getting the treatment in a timely way.
“We’ve spoken with many people with blood cancer and whānau and heard stories of the impact, both emotionally and on their health, as well as on the staff working in transplant units.
“So we think this is an incredibly important issue to address.”
‘Life or death’ for cancer patients
Leukaemia and Blood Cancer NZ chief executive Tim Edmonds said there had been nearly 15 years of under-investment in transplant capacity, “while also knowing that this increased demand was coming”.
With the current financial headwinds, he feared Health New Zealand was even less likely to sign off on the full business case, which would cost “tens of millions of dollars”.
“We understand they’re looking at a proposal to partially increase resourcing.”
Such a piecemeal approach was not good enough, because the queue would just get longer and longer.
“We’re used to the term ‘wait list’ being used for elective surgery and hip replacements or cataracts, but this is a matter of life or death for blood cancer patients.
“They’re having to wait months, and in the meantime they’re relapsing, their cancer is returning and it’s putting their lives at risk.”
Health NZ working to increase capacity
According to Health New Zealand, about 370 people received transplants in the year to June and there were up to 250 people either preparing or waiting for a transplant at any one time.
Health NZ director of strategy, planning and purchasing Rachel Haggerty said the national business case had been “prioritised” and was currently going through Te Whatu Ora’s funding proposal review process.
A national working group, set up in 2021, was monitoring wait times and coordinating patient flow.
“While waiting times do vary around the country, one of the things the recovery programme has achieved is load sharing between the different transplant units to improve equity in access to care.
“We are also working to increase the capacity to provide stem cell transplants in the Auckland, Wellington and Christchurch Treatment Centres, to meet current demand and address wait lists.”
She acknowledged the impact of wait times on patients and their families.
“We are working hard to improve the wait times for stem cell transplants, to reduce the variation in access to health services around the motu, and ultimately improve health outcomes for our patients.”
* Name has been changed
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