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What it's like living with two autoimmune conditions: ‘I've had to adapt everything'

What it's like living with two autoimmune conditions: ‘I've had to adapt everything'

NZ Herald04-06-2025
Exercise enthusiast and working mum Anita Hedges is determined to live life to the full, despite dealing with two autoimmune conditions. Photo / Supplied
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In What's It Like To… New Zealanders from all walks of life share stories of health & wellbeing. Here, Anita Hedges shares with Paulette Crowley what it's like to live with multiple sclerosis.
It was a couple of years ago when I noticed that something didn't feel right
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Pharmac must shift from being a gatekeeper of cost to an enabler of health
Pharmac must shift from being a gatekeeper of cost to an enabler of health

NZ Herald

time7 hours ago

  • NZ Herald

Pharmac must shift from being a gatekeeper of cost to an enabler of health

Their tireless advocacy, amplified by journalist Rachel Smalley's sharp campaigning and the lived experiences of thousands of New Zealanders, has helped shift this conversation from the margins to the mainstream. The public mood is shifting. Pharmac, once internationally respected for its fiscal restraint, now faces growing pressure to demonstrate its relevance in a rapidly evolving healthcare environment. How Pharmac can transform into a health enabler: Cecilia Robinson writes that it's about reimagining what Pharmac is here to do. Photo / Getty Images The question is no longer whether Pharmac is doing the best it can with what it has, but whether its model is still fit for purpose. As someone who moved from Sweden, where access to modern treatments is standard, I was horrified to discover that many New Zealanders must turn to Givealittle to fund medicines available freely elsewhere. It's not just unfair. It's unthinkable. Therefore, the appointment of Natalie McMurtry as Pharmac's new chief executive comes at a critical time. While her background in Alberta's health system brings relevant experience, the task ahead is not just about leadership, it's about reimagining what Pharmac is here to do. Pharmac must shift from being a gatekeeper of cost to an enabler of health impact. Its role can no longer be confined to doing more with less. The public expects more transparency, compassion and to access medicines freely available in countries such as Australia, Ireland and Singapore. Pharmac's original model was developed in a different era, when the core challenge was controlling pharma companies, who were gaming the system, and skyrocketing costs. These issues are still important, but cost-effectiveness, particularly as measured through QALYs (Quality-Adjusted Life Years), is now too narrow a lens. It doesn't account for broader system benefits: medicines that prevent hospitalisation, help people stay in work, reduce caregiving pressure or support mental wellbeing. New Zealand's medicine gap persists despite a $604 million investment, with patient advocates urging change. Photo / 123rf We need to move towards a broader, health-impact framework. Medicines should not be viewed in isolation as a standalone budget line but as levers that can help to reduce pressure across the entire system. They reduce demand on emergency departments, improve quality of life and help address chronic conditions before they escalate. This evolution in thinking requires stronger alignment between Pharmac and Health New Zealand Te Whatu Ora. As integrated care becomes the national direction, the way we fund medicines must reflect how those medicines contribute to overall system efficiency and patient outcomes. Pharmac's current structure, operating within a ring-fenced budget, has created artificial constraints that limit innovation. While it has helped secure competitive prices, it has also locked us into a rigid, risk-averse model that can't keep pace with the demands of modern medicine. To stay relevant, Pharmac must adopt smarter, more flexible funding approaches. This includes: ● Outcomes-based pricing: linking funding to real-world results, so high-cost drugs are only paid for if they work ● 'Access equity' funding: targeted budgets for treatments that don't fit traditional metrics, such as rare disease therapies ● Public-private co-investment: partnerships to enable earlier access to emerging or breakthrough treatments These models are already in use globally. New Zealand, with its small scale and centralised health system, is well placed to adopt and lead in this space but doing so will require political will and cross-agency collaboration. One of the strongest criticisms of Pharmac is that its decision-making too often overlooks the most marginalised. Equity must not be treated as a footnote, it must be central to how decisions are made. Pharmac must evolve to meet New Zealand's healthcare needs, advocates say. Photo / Getty Images That means asking tough but necessary questions: are Māori and Pacific patients missing out? Are people in rural communities being reached? Are high-cost treatments for small groups, such as children with rare conditions, being given a fair assessment? True equity means seeing value not only in volume, but in fairness. We must move away from one-size-fits-all measures of utility and toward a model that recognises the value of treating the under-served, the isolated and the overlooked. Pharmac has made efforts to improve its equity lens, but these steps need to be embedded and expanded. This includes involving communities earlier in decision-making, co-designing criteria for assessment and setting explicit targets to reduce access gaps. If there is one thing Pharmac must urgently regain, it is public trust. Right now, too many New Zealanders feel shut out of its processes, confused by its rationale and left behind by its pace. Trust won't be rebuilt through a communications campaign. The Pharmac chair, Paula Bennett, is pushing through some important reforms which require a fundamental shift in how Pharmac relates to the people it serves. That means: ● Transparent processes that clearly explain what's funded and why ● Better engagement with patients, clinicians, researchers, and advocacy groups ● A willingness to admit when the system isn't working and to try new things The leadership of new CEO McMurtry offers an opportunity to reset that relationship. Her described strengths, quiet achievement, systems thinking, and clinical experience, will need to be paired with openness, boldness, and humility. It's encouraging to see the appointment of Dr Dale Bramley as CEO of Health New Zealand Te Whatu Ora. Bramley brings deep experience as a public health physician and former chief executive of the Waitematā District Health Board, along with a strong understanding of the health system from both clinical and leadership perspectives. Dr Dale Bramley has been appointed CEO of Health New Zealand Te Whatu Ora, bringing extensive public health and leadership experience to the role. Photo / Dean Purcell His appointment provides a valuable opportunity to strengthen alignment between Health New Zealand Te Whatu Ora and Pharmac. As the country moves towards integrated care as the national model, our approach to funding medicines must also evolve, recognising the role modern medicines play in improving patient outcomes and driving overall system efficiency. Pharmac's future must align with where the health system is heading: more integrated, more proactive, more preventive. Medicines that enable self-management, support digital care, or reduce reliance on acute services are now core to how we deliver better outcomes. Health systems globally are shifting from volume to value. New Zealand must do the same. That requires moving beyond simple funding silos and embracing joined-up thinking, where medicine access is seen as a strategic investment, not just a cost centre. Pharmac has a unique role to play in this shift. But to fulfil it, the agency must move from cautious gate keeping to confident leadership. It must be willing to challenge legacy assumptions and champion bold ideas that better serve the public good. The real test is whether it can lead to a smarter, fairer, more compassionate approach to medicine access – one that reflects the realities of modern New Zealand, embraces equity, and evolves as science and society change. The opportunity is real. With the right leadership, the right frameworks and the courage to think differently, Pharmac can become not just a funding body but a force for health transformation. But that will take more than good intentions. It will require bold decisions, structural reform and a clear commitment to doing things differently. Tinkering at the edges won't cut it. The time for real change is now. Ultimately, Pharmac's legacy won't be defined by how tightly it managed its budget. It will be judged by how well it met the health needs of its people.

The Weekend: If I wrote a self-help book…
The Weekend: If I wrote a self-help book…

The Spinoff

time12 hours ago

  • The Spinoff

The Weekend: If I wrote a self-help book…

Madeleine Chapman reflects on the week that was. I'll be honest, it's 3.50pm on Friday and I have no meaningful thoughts to share on the state of the world because it is sunny in winter and that seems to throw everything off (in the best way). So instead, since we had a great and thoughtful essay on self-help books this week, and the deputy prime minister called 100,000 New Zealanders 'dropkicks', here are five things that I would put in a self-help book to improve your life. 1. Wear a singlet Yes it will make you feel like a five-year-old but if you are wearing a shirt or sweater and it's freezing, wear a singlet! A simple woollen white singlet can be the difference between feeling cosy and feeling a constant chill. I didn't think it would work so well after years of neglect but turns out even a singlet under a t-shirt will keep you warm. 2. Eat a kransky Sorry to the vegetarians but a debased single kransky from the local bakery on a cold day is truly one of life's greatest pleasures. It's kind of weird to order and weirder to eat but absolutely worth it. 3. Learn how to fold a fitted sheet This is extremely non-essential but learning how to fold a fitted sheet has huge morale payoff for what is a very basic set of movements. Add this tiny skill to boost your sense of self-worth every time you wash your sheets. 4. Realise you are in fact an elderly person in your 30s Reading those first three off-the-cuff items has confirmed once and for all that I am, and have always been, a 65-year-old man. Everyone has a true age and once you know yours it can set you free. How old are you, really? 5. Write a card A genuine sentiment in a handwritten card will outlive every trend. Stuck for what to get someone? Start with a card. A handwritten card alongside literally anything is a good gift. And with everyone existing in a world of typed text, what a joy to see someone's personality in their handwriting. Anyway, that's my self-help book and now it's time for my afternoon nap. The stories Spinoff readers spent the most time with this week A rare and compelling example of Main Character syndrome lasting a whole week. Feedback of the week On Help Me Hera: There aren't enough hours in the day ​ 'The world lost one Ozzy this week; Shelley wrote about another: 'Look upon my works, ye Mighty, and despair.' We are all just ripples and the pond is small.' 'Great commentary here. Several years ago I developed a unit of work for the Level 3 English writing portfolio. It unpacked the conventions, students engaged with self-help texts, then wrote their own. It was hugely successful in a few ways. 1. It reiterated the tried and tested formula that drives all self-help. 2. Students developed a critical understanding of the formulaic nature of self-help. 3. They wrote fantastic texts that spoke to their own experience.. from 'How to be Slick and pick up chicks' to 'Living with a bi-polar parent'. And for me, I still enjoy the occasional SH book (Oliver Burkeman in particular), but I approach the genre with healthy scepticism. They have their place, and surely human nature is grounded in seeking continuous improvement? '

Doctors welcome health minister's GP training funding shake-up
Doctors welcome health minister's GP training funding shake-up

RNZ News

time19 hours ago

  • RNZ News

Doctors welcome health minister's GP training funding shake-up

Royal New Zealand College of General Practitioners president Dr Samantha Murton. Photo: Supplied Doctors are welcoming the government's move to fully fund specialist GP training. Previously, medical graduates only had their first year of specialist general practitioner training paid for, but now all three years would be covered. The government would also cover the exam costs for about 200 trainees, and full education costs for about 400 year 2 and 3 trainees each year. President of the Royal New Zealand College of General Practitioners - which delivers the 'General Practice Education Programme' - Dr Samantha Murton, said the changes brought GP training in line with all other medical training across New Zealand and Australia. "This funding will be a gamechanger for current and future trainees. This is a significant acknowledgement for the specialism of the general practice workforce and the vital role we play in healthcare being as important as those of our peers in secondary hospital settings. "Not only will this funding offer the necessary financial support our GP registrars need throughout their training, but we are optimistic that the news will encourage medical graduates who have an interest in general practice but have been put off by the financial barriers to make the step to train as a specialist GP. To them, I say welcome and you won't regret your decision." Chief executive Toby Beaglehole said the college was enthusiastic that primary care funding was heading in the right direction. "We are focused on building a sustainable workforce for the future , which starts with training and the equitability of our program costs to other specialist medical training. "This funding sends a signal to the sector that the expertise of general practice is valued as a vital part of the health system." Announcing the changes at a GP conference on Friday, Health Minister Simeon Brown said they would help improve New Zealanders' access to primary healthcare . Health Minister Simeon Brown. Photo: Calvin Samuel / RNZ He also announced the government's funding method for GP clinics, known as capitation, would be updated for the first time in more than 20 years, with changes taking effect from 1 July, 2026. "The current model is outdated and doesn't reflect the needs of patients. The revised formula will go beyond just age and sex, to also include multimorbidity, rurality , and socioeconomic deprivation," Brown said. "These changes will better distribute funding to where it's needed most, so that GP clinics with a higher needs population of enrolled patients will receive more funding to care for them." A new national health target would be developed with the primary care sector, proposing to ensure that more than 80 percent of people could see a primary care provider within one week. "People shouldn't have to wait weeks to see a doctor. Delays can lead to poorer health outcomes, more pressure on hospitals, and growing frustration for patients. We're focused on delivering timely, quality care that puts patients first." Sign up for Ngā Pitopito Kōrero , a daily newsletter curated by our editors and delivered straight to your inbox every weekday.

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