“Patients are suffering unnecessarily, enduring heightened pain and distress, because the medications that typically control their symptoms are either unavailable or prohibitively expensive,” says Dr Peter Allcroft, Chair, Palliative Care Australia.

Despite repeated calls for action from the palliative care sector, Palliative Care Australia (PCA) says there has been little progress toward ensuring a stable supply of these life-changing drugs.

“A collective of 7 organisations wrote to parliamentarians in early December [2024] trying to escalate this issue after months and months of slow or no progress, people, including children are dying without adequate pain relief,” says Dr Allcroft.

‘Supply becoming increasingly uncertain’

Most of the affected medicines are vital opioid analgesics that have been used for decades to manage severe pain and other symptoms in palliative care patients.

With their supply becoming increasingly uncertain, clinicians are forced to prescribe less effective alternatives, resulting in less reliable pain relief and risking unwanted side effects.

Adding to the distress is cost, with many of the alternative medications not subsidised through the Pharmaceutical Benefits Scheme (PBS).

One of the most startling examples is hydromorphone SR, which costs the public $182 for 32mg, which a non-PBS-listed alternative is $4209 for 100 tablets.

PCA campaign to resolve the ongoing issue

As part of the ‘better access to palliative care’ campaign leading up to the federal election, PCA has launched an 11 point plan to resolve this ongoing issue.

“Our recommendations centre on establishing a national stockpile of critical medicines, fostering domestic pharmaceutical manufacturing, strengthening the PBS, and empowering the TGA,” says Dr Allcroft.

“Four hundred people die every day of a terminal illness — limited or no access to these critical medications has a ripple effect through families and communities.”

With nearly 20,000 signatures already on the campaign’s petition, advocates hope the issue will be addressed ahead of the federal election, ensuring better quality of life for those in palliative care.

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Guild Acting National President Nick Panayiaris said that after a tough election campaign it was time to get back to business and help provide ongoing certainty for Australia’s community pharmacies and their staff.

“It’s been a tough few years for the community pharmacy sector and the new Government needs to ensure these practices remain confident about their future so that in turn they can continue providing the services their communities depend on,” Mr Panayiaris said.

“The Labor Party has long been a strong supporter of community pharmacy and recognises the important role that community pharmacists play in the healthcare sector.

“Never has this been more evident than with Covid-19 when bringing pharmacies into the vaccination rollout helped to get the program back on track.

“We need the new Government to build on this impetus by ensuring community pharmacies can continue to provide the medicines and services their patients need.

“And we need to go further.

“We need to see pharmacists working to their full scope of practice.

“At present they are under-utilised and by allowing them to provide the full range of services they are trained for will help ease pressure on doctors, hospitals and emergency departments while keeping communities healthier.”

Mr Panayiaris said the Guild looked forward to Labor implementing its election promise to reduce the maximum general PBS co-payment to $30.

“Making medicines more affordable for all Australians is a priority and we will work closely with Health Minister designate Mark Butler to help implement this measure,” he said.

“In addition, we will continue to look at ways and strongly advocate to improving medicine affordability for our patients.

“Our patients and their wellbeing must come first.”

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CEO Maree McCabe says the health focus in the federal election campaign thus far is to be commended, yet a glaring gap exists between the rhetoric and the needs of close to half a million people living with dementia.

“The 447,000 Australians living with dementia, their families and carers should not have to wait until April 2020 when the Royal Commission into Aged Care Quality and Safety hands down its recommendations, when urgent action is required now to meet their needs,” she said.

“Twelve months is a long time for someone to be waiting to know more when you have a progressive, degenerative brain disease for which there is no cure.

“The federal election campaign presents the perfect opportunity for all parties and candidates to demonstrate their commitment to people living with dementia now.

“Dementia is the second leading cause of death in Australia and the leading cause of death for women.

“There are 1.5 million people in this country who care and provide support for people who are living with dementia, and the number is increasing.

“Dementia Australia calls on both the government and the opposition to put dementia on the public agenda now, as a priority, to create an inclusive future where all people impacted by dementia receive the care and support that they need and deserve.”

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Dementia Australia Chair Professor Graeme Samuel AC says the royal commission into aged care quality and safety is underway and presents a significant opportunity to transform the industry to make a profound and lasting difference to the lives of all people impacted by dementia.

“This process will take time and we need urgent action today for the people living with dementia, and their families and carers, who are not receiving the care and support they need and deserve,” he said.

The costs of dementia to the nation are rising. In 2019, dementia is estimated to cost Australia more than $15.5 billion, with an expected increase to more than $36.8 billion by 2056.

Dementia Australia seeks commitment in the forthcoming election from all parties to address three integral components that will create an inclusive future where all people impacted by dementia receive appropriate care and support.

These include:

• Developing a clear pathway for diagnosis and support.
• Defining quality standards in dementia care.
• Reducing discrimination.

“These priorities embrace a range of transformative initiatives that span a range of sectors and can become a reality with a total investment of $30 million over three years,” Professor Samuel said.

“They are the result of a year of extensive community consultation, where we asked people living with dementia, their families and carers what the biggest issues were for them, and how Dementia Australia can have the biggest impact.”

Danijela Hlis, dementia advocate, daughter and former care partner said: “Quality care is more than good symptom control and emotional support. It’s recognising and meeting the needs of the person living with dementia.”

Dementia Australia CEO Maree McCabe believes the organisation cannot achieve these goals in isolation.

“With 447,000 Australians living with dementia, a generalised approach to health, disability and aged care reform is not enough,” she said. “Dementia is not yet core business and requires specific attention to make it so.

“A wide range of evidence comprehensively demonstrates that the care provided to people living with dementia is worse than the care delivered to any other vulnerable group.

“Our vision is to work with all federal political parties and candidates to elevate the issues relating to dementia and to improve the lives of people of all ages living with all forms of dementia, their families and carers.

“During this election campaign we will be asking all candidates to articulate their vision for dementia.”

To get involved in the campaign and engage political candidates this election, access the dementia Australia action pack at: https://www.dementia.org.au/engaging-your-local-candidate-this-election

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“Simply throwing new money at old problems will be doing current and future generations of Australians a disservice,” she said. “The systems that have served us well in the past are struggling to cope with today’s demands of an ageing population, higher levels of chronic disease, and rapidly rising costs – including out-of-pocket costs – in the face of constrained budgets.

“Governments will have to be smarter, more strategic, and working together in order to deliver a new, affordable, fit-for-purpose health system.

Ms Verhoeven says she  believes strategic investment of public funds is required, rather than “pot shots of cash and band aid solutions”.  She says strategy, not stimulus, is needed to progressively reorientate our healthcare system to focus on patient outcomes and value rather than volume and vested interests.

“This will not be an easy task,” she said. “One recalls the fierce opposition from powerful vested interests to the establishment of Medicare, which underpins our public healthcare and hospital sectors, and is the foundation for universal access to quality healthcare in Australia.

“Reforming healthcare cannot be accomplished overnight, but some areas need serious attention right now.”

Ms Verhoeven supports a number of policies and pledges from across the political spectrum, including the $2.3 billion investment promised by Labor to reduce out-of-pocket costs and waiting times specifically for people with cancer.

“A diagnosis of cancer should not mean having to meet unexpected medical bills of many thousands of dollars a year or long waiting periods for care,” she said. “We also applaud Labor’s commitment to reducing tobacco use: prevention must be part of every party’s health platform.

“Similarly, we welcome the Coalition’s commitment to a national strategy to tackle excessive out-of-pocket costs charged by medical specialists. Transparency of information about costs will help reduce ‘bill shock’, although more needs to be done to reduce those out-of-pocket costs.

“We also support the Australian Greens’ commitment to affordable dental care, although this must be focused on outcomes and achieving value, with an initial boost for adult public dental health funding.”

Ms Verhoeven suggests prevention strategies, including water fluoridation in all communities and a tax on sugar sweetened beverages, are also required.

“In the medium to longer term, however, large structural reforms are needed across the whole system to deliver better healthcare access and affordability,” she said. “And AHHA, in consultation with Australia’s best health leaders, has mapped out how to transform our healthcare system into a fit-for-purpose 21st century system.

“Regardless of who forms government, all political parties should keep in mind a commitment to an effective, contemporary healthcare system is a commitment to a healthy Australia.”

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