Budget 2025: Coromandel policeman's urgent plea for life-saving cancer drug
First proposed to Pharmac back in 2017, daratumumab is not a new drug. Advocacy groups, drug companies, doctors and patients have been fighting to get it funded for eight years.
Their renewed call for government funding comes off the back of Pharmac's March announcement that it will not fund daratumumab.
Hamilton said the decision was devastating.
'I've said it before and I'll said it again - eight years later, we still have no movement, it's pathetic,' he said.
According to Multiple Myeloma New Zealand, myeloma is the second most diagnosed blood cancer in the country, with 400 new cases diagnosed annually.
Like many other patients in New Zealand, Hamilton has had to turn to the public for help, something that goes against everything he knows as a police officer.
His long-time friend Anna Megaffin started a Givealittle page, which Hamilton believes should not be necessary if Pharmac paid more attention to people's needs.
He said Pharmac's cost-cutting strategy was getting more attention from the Government than what they needed to be doing.
'Politics is costing lives - internal shenanigans and internal problems clearly get more attention.'
Pharmac director of advice and assessment, Dr David Hughes, told the Herald the agency could not fund the drug with the current budget.
'The ranking of the updated proposal, and the budget currently available to us, unfortunately means we are not able to fund daratumumab at this time,' he said.
Hughes emphasised the drug is not off the table for future consideration, 'should we receive further funding'.
Myeloma haematologist Rodger Tiedemann said in many respects, Pharmac was doing the best job it could to provide medicines to New Zealanders, but it simply was not funded enough.
'As a result of the underfunding of Pharmac, there's a lot more celebration of cost-cutting rather than celebration of bringing newer and better treatments to patients who need them.'
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Some patients' lives were being needlessly cut short, Tiedemann said.
'Patients die early, or they pack up their lives and move somewhere else,' he said.
Drug company Johnson and Johnson (Janssen-Cilag Pty Ltd) is urging the Government to 'use its May budget to provide funding for the treatment'.
Commercial lead Hayden Paul said New Zealand patients have already waited too long for access to the treatment.
'Without funding, patients will continue to wait and this is unacceptable when the treatment is available in many countries globally and reimbursed overseas.'
Hamilton says myeloma patients can still contribute to society with the right treatment. He wants the Government to consider the economic benefits of investing in proper treatment.
Pharmac's funding situation also impacts the decisions of companies wanting to invest here, Business NZ deputy chief executive Phil Love said.
'Businesses need certainty and the removal of red tape so that they can invest in capital and people, products, and innovation.
'I think we've got to make New Zealand as attractive as possible for companies to grow here and for overseas companies to invest here in the long term.'
Associate Health Minister David Seymour said he was unable to share whether Pharmac would receive further funding in the Budget.
'In this Budget, I have advocated for more Pharmac funding, as anyone in my position should. The results of that advocacy will be revealed in the Budget, but cannot be announced now,' he said.
'Because Pharmac is independent, we need to respect their decisions within their fixed budget, while working to increase their budget.'
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The Spinoff
11 hours ago
- The Spinoff
The Spinoff Essay: A bit of pain
'I'm lucky; I've had it for only five years or so.' David Hill on living with chronic pain. The Spinoff Essay showcases the best essayists in Aotearoa, on topics big and small. Made possible by the generous support of our members. I ache. I'm sore, nearly all the time. I'm one of the estimated 900,000 New Zealanders who suffer from chronic pain. Chronic or neuropathic pain is usually defined as pain that's lasted for more than three months. I'm lucky; I've had it for only five years or so. Multiple thousands of Kiwis have suffered for decades, or their entire life. More statistics. Over 40% of people in the UK are thought to suffer, at various times and to various degrees. (The US estimates almost 50%.) For over-75s in Britain, the figure lifts to 65%. About 80% of this is back and neck pain. In Aotearoa, a 2018 report from research group Sapere suggested that chronic pain costs our health system some $2 billion annually, plus another $15 billion in lost production and benefit costs. Utterly predictably (think housing, working conditions, $60 for a GP visit, $75 for a physio session), it affects lower socio-economic groups more. Oh, and (think trad Kiwi male stereotypes this time), women are more likely to report it than men. In my case, it's cervical spondylosis with foraminal narrowing and radiculopathy. I like to roll out the phrase so I can watch listeners' eyes cross as they wonder how much time I've got left. English translation: my neck is stuffed. Age, plus bad posture at the keyboard, means the cushioning discs between cervical vertebrae have worn thin. Bone spurs have formed. My mobility is limited; I get deep pain in the neck and between shoulder blades, plus intermittent giddiness. I've gone into detail because, like most sufferers – and I dislike that word – I usually don't say much about it. People with chronic pain get little sympathy. Who wants to hear about an ailment that goes on and on, especially when it usually comes with no bandages, slings, plaster, other visible signs of affliction? Like Chronic Fatigue Syndrome and Long Covid, it's easily seen, even by some health professionals, as self-pitying, even malingering. ' Whatever happened to 'pull yourself together'?' I heard one sceptic sniff, after an acquaintance had vented over his months of continuing hip and leg discomfort. It's the least telegenic of ailments; if we do appear on screen, we're usually caricatured as boring old whingers who need to snap out of it. ' It's all in your head,' is another common dismissal. True. Also stupid. Of course it's in the head, because that's where the brain's pain receptors are. We don't register any injury or discomfort till those receptors fire. Trouble is, if the pain continues for more than a few hours, your pre-frontal cortex starts assessing the sensation in terms of what it may mean long-term, and begins reinforcing the synapses associated with stress and discomfort. The brain's 'pain switch' gets stuck in the ON position, and your body becomes convinced of its distress. Neurologist William Davies notes that 'pain carves a path directly between the realms of mind and body'. It's called Control Sensitisation: just as Pavlov's dogs slobbered when a bell rang, almost any tug or tension for a chronic pain sufferer sends those brain receptors into power drive. It means that pain can become a habit, and like many unpleasant habits, it's hard to get rid of. A cycle of discomfort – sleep deprivation – stress – more discomfort and more stress can become established. Withdrawal and depression may follow, with the symbolic Black Dog liable to squat and crap on any of your days. So yes, it is all in the head, and it's utterly genuine. There have been some curious associated discoveries. Women's limbic system responds to pain more than men's, so women often experience greater emotional distress, while the fact that men's pre-frontal cortex is more affected means they may see the issue primarily as a problem to be analysed. And chronic pain may be exacerbated by apparently unassociated events; Brexit, the Covid pandemic, even the Trump presidency saw a rise in reported cases. You're right: the Orange Roughy can indeed become a pain in the arse. Bad news for the next few years. Chronic pain victims make unrewarding patients, even to sympathetic doctors – and not all are. Symptoms are frequently vague and diverse. We're the unwell who can sometimes seem well. Our GPs ask questions, refer us to specialists who ask more questions, at $2 per syllable, rule out nastier possibilities if you're lucky (and that is indeed a help), and usually intone variations on the theme of 'y ou'll have to live with it'. I sympathise with them, actually: as with Chronic Fatigue or Long Covid, we seldom give them the satisfaction of finding a specific cause. So chronic pain is a formless and often unresponsive condition. It can take a long time to get a diagnosis, and it seldom comes with any clear path of action. It can be treated, but seldom cured – whatever that last word may mean. What are the treatments? Painkillers, anti-inflammatories of course, though all of them, except perhaps paracetamol, come with potential side effects. A TROUP (Trends and Risks of Opioid Use for Pain) study in the US found that 22-26% of people prescribed opioids for non-malignant chronic pain ended up misusing their drugs. Distraction, meditation, exercise, diet, therapy, physio and chiropractic, the analytical and shared talk of Cognitive Behavioural Therapy are other courses of action – and action is an early step to taking some degree of control. The New Zealand Pain Society (you'll find them online) offers sensible, practical programmes and resources. Complex Chronic Illness Support, also online, can help as well. Our local hospital used to run chronic pain workshops, where physio, dietitian, psychiatrist, counsellor would reassure attendees that they weren't malingerers; it was a genuine ailment, and here was a list of things that might help. They're the only workshops I've ever attended where some participants stood up every 10 minutes and lay down in the aisle for a bit. They were enormously valuable for their collegial quality, finding that you weren't the only sufferer. They've been discontinued – more funding cuts at Whatu Ora, I gather. Alan Gordon in his book The Way Out estimated that in 2021, there were 1.2 billion chronic pain sufferers worldwide. The number is rising: we're living longer and hurting for longer periods. Other contributing factors include people expecting to be pain-lite and becoming more inclined to seek help when we're not, plus our living in an increasingly isolated society, where loneliness aggravates almost any condition. The outlook isn't great. The future, for me at any rate? Keep learning – in the most positive sense of the verb – to live with it. Take unexpected solace from the fact that on good days, the world can seem brighter and more rewarding than it did before my neck started to pack up. And wonder if assault with the nearest deadly weapon might be a pretty reasonable response to anyone who tells me that it's all in my head.


Otago Daily Times
13 hours ago
- Otago Daily Times
Public-private healthcare opportunities identified
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Scoop
a day ago
- Scoop
Otago Central Lakes Strategic Health Report Available To Public
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