‘No one cares’: 25-year-old with extensive family cancer history can’t access genetic testing
That’s the headline on a Stuff report which alerted the public to the experiences of a woman who was pregnant with her first baby when she found out she was likely to be at higher risk of developing cancer. But she was placed on a formidably long waiting list for the genetic tests she then sought.
But a serious shortage of staff and resources to undertake the tests does not necessarily mean “no-one cares”.
The headline claim that she “can’t access genetic testing” more obviously is bollocks because the report says she will be getting treatment – from the private sector at a price – in a few months.
Here’s what readers were told about Annalise Buchanan’s grievance (and her concerns are understandable):
The 25-year-old qualifies for publicly funded genetic testing to look for a BRCA 2 gene mutation following positive tests from other relatives and an extensive family history of cancer.
But the waiting list keeps getting pushed out. She now faces a nine-month wait, but likely longer, with a referral for another test declined because she doesn’t have symptoms of cancer – yet.
“By the time I have symptoms, it’s too late,” Buchanan says. “They don’t care.”
Stuff tells us Buchanan is “pissed off” and says there are likely hundreds or thousands of people on the list – that didn’t seem to be moving – who were waiting and hoping they don’t develop cancer in the meantime.
Time undoubtedly is important (as it is in all cases involving cancers):
The mutation increases the likelihood of developing breast cancer by five times, and means you are between 10 to 30 times more likely to get ovarian cancer.
But the waiting list is despairingly long:
There were 1980 people waiting for a first appointment with a genetic counsellor, Te Whatu Ora Health New Zealand said.
But the Health New Zealand spokesperson told Stuff there was a nine-month wait time because of “staffing challenges” and high referral rates.
This baldly means there’s too much demand for too few health experts and resources, and if there aren’t enough staff and resources to cope with the waiting list – well, what are health providers supposed to do?
And does their inability to cope with the demand seriously amount to indifference?
As things have turned out, Buchanan seems to be luckier than others because she can afford to pay for the genetic testing she seeks.
Forced to go privately, Buchanan was now looking at a three-week wait.
True, that might not be an option for people who can’t afford it.
But the Stuff headline is telling us Buchanan can’t get treatment.
Perhaps the headline writer didn’t bother reading all of the article, which goes on to say:
An updated quote for the genetic testing through private healthcare came in at $350 and Buchanan had decided to proceed. The wait time was three weeks. After that, it took six weeks to get the results.
The Stuff report says a Te Whatu Ora spokesperson would not respond to Buchanan’s concerns, but said referrals were triaged according to need.
The spokesperson explained how the policy is applied and how priorities are determined.
The report appeared just a few days after Budget Day, when $26,510 million was appropriated for Vote Health in 2023/24, to directly support the day-to-day operation of strong and equitable public health services delivered by a skilled workforce in our communities, hospitals, and other care settings.
The Vote for 2023/24 comprises the following:
- $12,720 million (48% of the Vote) to enable Te Whatu Ora – Health New Zealand to deliver hospital and specialist services
- $8,158 million (31% of the Vote) to enable Te Whatu Ora – Health New Zealand to deliver primary, community, public and population health services
- $3,071 million (12% of the Vote) for capital investment, largely for infrastructure projects and to fund the resolution of claims from historical non-compliance with the Holidays Act 2003
- $1,339 million (5% of the Vote) to enable Pharmac to both manage ($28 million) and purchase pharmaceuticals ($1,311 million)
- $616 million (2% of the Vote) to enable Te Aka Whai Ora – Māori Health Authority to deliver hauora Māori services
- $295 million (1% of the Vote) to support the COVID‑19 vaccine strategy
- $238 million (1% of the Vote) to enable Manatū Hauora – Ministry of Health to undertake its stewardship role of the health system
- $69 million to support other health services including $40 million for monitoring and protecting health and disability consumer interests and $26 million for problem gambling services.
There is also a capital expenditure permanent legislative authority of $1.6 million for Manatū Hauora – Ministry of Health.
It is unlikely these billions will be enough to reduce waiting lists as quickly as Buchanan – and too many other patients – would want.
Whether that amounts to not caring is arguable.
One thought on “Stuff and nonsense: the tale of a woman who can’t get publicly funded genetic testing in a hurry – but she can get private testing”
The issue here is that the Public testing insists on having a counselling session pre the testing – as they think people need forewarning of possible outcomes – which of course a GP will have already explained – and in this case family history has also covered implications. Just a ridiculous bureaucratic waste
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