Chapter 5Structural barriers to equitable care
Access to these life-saving tests and treatments should be a choice for patients, not a privilege or postcode or tumour stream lottery.
5.1The committee received substantial evidence in relation to structural barriers which can contribute to, and exacerbate inequitable access to diagnostic, treatment and support services for rare and less common cancer patients, and their loved ones.
5.2This chapter discusses how the following factors can impact patient experiences and outcomes, throughout their cancer journey:
health literacy;
financial ‘toxicity’ including direct out-of-pocket costs, indirect out-of-pocket costs, and changes in financial circumstances following a rare cancer diagnosis;
geographical challenges – particularly for those in regional, rural and remote Australia;
health workforce issues; and
cultural factors – particularly in relation to First Nations people and communities, as well as culturally and linguistically diverse (CALD) communities.
5.3This chapter concludes with the committee’s views and recommendations relating to these matters.
Health literacy
5.4The committee heard that health literacy is an important factor which can influence diagnostic and treatment outcomes and experiences for cancer patients. For instance, Professor Mark Morgan, Chair of the Expert Committee for Quality Care at the Royal College of General Practitioners (RACGP) told the committee that people’s level of health literacy and self-advocacy can influence their ability to seek answers and appropriately manage symptoms.
5.5The broad implications of poor health literacy were explained by both Queensland Health and the Pancare Foundation. Queensland Health advised that patients with low health literacy are more likely to have worse health outcomes overall due to:
lower engagement with health services and preventive services such as cancer screening;
higher hospital readmission rates;
poorer understanding of medication instructions; and
a lower ability to recognise potential cancer symptoms and/or self-manage their care.
5.6Lived experience inquiry participants outlined the particular challenges regarding health literacy and navigating the management of a rare or less common cancer. For example, Lesley emphasised the ‘life saving’ role health literacy has played in her recurrent adrenal cancer journey. She explained:
Knowing how to access research papers, to read and process those papers, and having access to and attending virtual conferences for adrenal cancer has helped me to stay alive and provides for informed discussions with my oncologist and surgeon ... By reading these papers and contacting a PhD student, I was referred on to my current surgeon, which has been a life-saving experience.
5.7Similarly, Caitilin, who was diagnosed with ovarian cancer, reflected that as a clinical scientist herself, she feels ‘lucky to be health-literate’ throughout her journey, but acknowledged that not all are so fortunate. She added:
It has been my ability to self-advocate for the right genetic tests and personalised treatments at the right time that has really kept me alive this long, making those sliding-door moments open in my favour.
5.8Judi, who lives with pancreatic cancer, also echoed the importance of health literacy. She reflected that ‘you go from being a layperson to suddenly becoming someone who, unless you get health literate and advocate for yourself, could sink or swim’.
5.9The Hospital Research Foundation Group reflected that individuals diagnosed with more common cancers such as breast or prostate cancer, ‘have far easier health literacy pathways than those diagnosed with rare cancers and neuroendocrine cancers’. Paul Flynn, Chief Executive Officer of the Hospital Research Foundation Group, expanded on this matter:
Having recently transversed the prostate cancer pathway myself … access to information to make informed choices once I was past the initial shock was very good. My good experience is often not the experience a patient from a rural and remote area or those diagnosed with rare cancers have.
5.10These issues closely relate to the broader concerns discussed in Chapter 4 of this report, regarding calls for better overarching availability and accessibility of information and guidance for patients, throughout their cancer journey.
5.11As discussed in Chapter 4, the Australian Cancer Plan has identified a two-year ambition, as part of their ‘Enhanced Consumer Experience’ strategic objective, to ‘improve availability of co-designed, tailored information and care for consumers to improve health literacy and reduce cancer-related stigma’.
Financial toxicity
5.12Inquiry participants provided significant evidence outlining experiences of financial hardship encountered whilst seeking diagnostic or treatment services for rare and less common cancers.
5.13Inquiry participants were of the view that these hardships were a result of cancer-related financial toxicity, which Ms Megan Varlow, Director of Cancer Control Policy at Cancer Council Australia explained includes:
costs associated with receiving cancer:
direct out-of-pocket costs
indirect costs
change in someone’s financial circumstances; and
stressing about one’s financial situation.
5.14Ms Varlow explained that rare and less common cancer patients are more likely to experience financial toxicity because:
…a lot of the other treatments that they might have to access or seek out for themselves are additional costs that are not necessarily covered by the way the health system is currently funded.
5.15From a patient’s perspective, Caitlin, who lives with stage 4 clear cell ovarian cancer asserted that ‘any cancer is financially toxic - but to be further financially penalised due to a rare pathology seems unethical’.
5.16This can result in financially distressing situations for patients and their families, as evidenced by Associate Professor Christopher Steer, President of Private Cancer Physicians Australia, who has directly observed the ‘extreme choices patients feel they must make’. He outlined a recent, firsthand example:
Last week, for example, I experienced the anguish of a patient who is a young father of school aged children who was facing the choice of drawing on his super to pay the mortgage or selling his house whilst he was undergoing treatment for a curable condition. The rising cost of living hurts all Australian families, but for those with cancer the costs can be crippling.
Direct out-of-pocket costs
5.17Inquiry participants expressed concern over high out-of-pocket costs incurred when accessing diagnostic and treatment services. The different types of out-of-pocket expenses incurred across the rare and less common cancer journey, and their impacts on patients and families, are discussed in the following sections.
The costs of diagnosis
5.18As discussed in Chapter 2, inquiry participants told the committee that the diagnostic process for rare or less common cancers is often long, logistically burdensome and costly. This section discusses the financial aspects of accessing these services.
5.19The Leukaemia Foundation outlined that delayed diagnosis can increase costs for patients and provided the following example:
The patient took over 3 years before a diagnosis was made despite presenting with enlarged lymph nodes (ultrasound but no biopsy). So those medical costs, all the CT and biopsies and testing, and medical visits pre-diagnosis was borne out of pocket.
5.20MsMeredith Cummins, Chief Executive Officer of NeuroEndocrine Cancer Australia also outlined that unnecessary tests and mis-diagnoses, can have financial consequences, for both patients and the health system:
The cost of unnecessary tests impacts patients and the public healthcare system, predominantly because of this misdiagnosis and prolonged time, and it costs patients about $1,700 over three months for out-of-pocket expenses.
Treatment costs
5.21As discussed in Chapter 3 of this report, many treatments for rare and less common cancers are not government funded, compounding direct out-of-pocket expenses, which can make them ‘prohibitive’ to access.
5.22For instance, Jim, who lives with a rare salivary duct cancer, described investigating clinical trials for treatment because his class of drug (BRAF V600E drugs), while available in Australia, is not listed on the Pharmaceutical Benefits Scheme and therefore would cost him between $10 000 to $15 000 a month. This led him to choose a less genetically targeted treatment method which scans later showed as being ineffective. He highlighted that due to these financial barriers, the ‘BRAF V600E pathway still remains blocked’ for him.
5.23Relatedly, Claudia, who was diagnosed with pancreatic cancer in 2022, identified that even in cases where treatment costs are covered by Medicare, an initial payment is required before a treatment begins. She observed that this can be prohibitive and unfair, stating:
… my treatment for the pancreatic cancer and a nodule cost $6230.00, and another nodule treated later cost $3950. These are expenses not everyone would be able to pay in advance. It indicates an unfair and unequitable access to treatment, based on a patient’s financial situation …
5.24The emotional toll this can place on patients due to the vast cost differences in treatment compared to other cancers was articulated by Sarah, who emphasised feeling frustrated and less valued as a rare cancer patient. She explained that despite her son’s school fundraising thousands of dollars ‘the depressing thing is … it only covered about a week of treatment. Having a rare cancer is expensive’.
5.25The committee also heard that monitoring cancer progression and treatment effectiveness can require regular scans and testing, which often incur out-of-pocket expenses to patients. For example, NeuroEndocrine Cancer Australia explained that there is a specific type of blood test (Chromogranin A) used in the diagnosis, monitoring and management of neuroendocrine tumours. This test is Medicare non-rebatable and sometimes occurs every three to six months, which ‘over many years can add up to thousands of dollars’.
Overseas treatment costs and crowdfunding
5.26As discussed in Chapter 3, clinical trials are often the only treatment avenue for patients with rare or less common cancers, which can result, in patients and families self-funding travel costs to participate in trials overseas where they are more ‘readily available’.
5.27Also outlined in Chapter 3, patients and their families do not have coverage for clinical trials under the Medical Treatment Overseas Program. This can result in out-of-pocket expenses upwards of $300 000 to participate in international trials.
5.28Families often resort to crowdfunding to pay these high costs, which Ms Lucy Jones, Chief Executive Officer of Neuroblastoma Australia expressed concern over:
Leaving families to rely on fundraising to save their child is to sanction survival disparities and inequities in the most serious of stakes … Whilst some families do manage to raise the many hundreds of thousands of dollars often needed, it comes at a huge emotional and financial cost.
5.29Kate, whose niece, Emily, was diagnosed with neuroblastoma also echoed concern over crowdfunding, which she undertook for 6 months to access ‘promising’ overseas treatment for Emily. She asserted that ‘no family should have to fundraise for their child’s future’.
5.30Katherine, whose three-year-old child was diagnosed with neuroblastoma, illustrated to the committee the emotional burden of crowdfunding, as it ‘entails putting your whole life and trauma out into the public domain’ and was told that ‘the more personal, upsetting photos will raise more money’.
Indirect costs
5.31Further to the expenses outlined above, considerable evidence to the committee highlighted that additional indirect costs associated with a rare and less common cancer diagnosis, can magnify experiences of financial toxicity.
5.32Several inquiry participants described the out-of-pocket expenses and burden associated with travel and relocation for diagnostics and treatment. For instance, Associate Professor Antoinette Anazodo, Paediatric and Adolescent Oncologist from Sydney Childrens Hospital Randwick, described the financial implications patients can experience due to travel and relocation:
… we have data from our centre that shows that the average distance between home and the cancer centre in Sydney is 327 kilometres … it means that many of these patients … have to relocate for the time of their treatment. On average, cancer treatment for a child is between six and 12 months. So, again, we’re already talking about a point of financial embarrassment for patients who have to be in one of these centres...
5.33The committee was also informed of other incidental expenses patients must cover throughout their cancer journey, including food, parking, support equipment and other health services.
5.34For example, a mother reported paying over $7000 for meals (450 total) during her son’s 10-month hospital stay for osteosarcoma treatment.
5.35Beau, who tragically lost her son Ryley to DIPG at just eight-years-old in March 2023, also indicated that essential equipment to support children with DIGP may not be supplied, with some families having to purchase their own wheelchairs, recliners, toiletries and bathing aids. She drew the committee’s attention to one example where a family was unable to afford a wheelchair-accessible car to help transport their sick daughter to appointments:
As there was no financial support to enable this family to access a wheelchair-accessible car, they swallowed their pride and begged on social media for the public to help source a car for their hospital appointments. Their daughter died stuck in her home, her parents unable to borrow a car or fundraise enough money to purchase a new one in time. How is this acceptable? It isn't. It's disgraceful.
5.36Angie, whose daughter Eve was diagnosed with DIPG in 2021, expressed similar concerns about the potential costs of support equipment to assist her daughter:
Had we not been so persistent with the therapies through the allied team, we would have had to pay out of pocket for these treatments or she would be completely immobile. If she were to become immobile, we would need access to wheelchairs, house adjustments to help her mobilise in the home, different therapies to assist with her life quality and numerous other factors based on her specific needs.
Change in financial circumstances for both patients and carers
5.37The committee heard several accounts from individuals with lived experience and their families, regarding the adverse financial changes that can accompany the diagnosis and treatment of a rare and less common cancer.
5.38Some inquiry participants emphasised the loss in earning potential for patients due to time away from work. For instance, some submitters explained that maintaining work can be especially challenging for rare cancer patients and their families due to lengthy diagnostic processes, a multitude of appointments and scans, symptom management, and caring responsibilities.
5.39Michelle described to the committee the financial stress her life partner, Mark, experienced during his battle with stage 4 pancreatic cancer. Michelle outlined that it became a ‘full-time job to survive’ for Mark:
You’re mostly unable to work, and yet you’re expected to be able to make your monthly life payments—rent, mortgage, food, utilities—and factor in a myriad of meds, herbs, multiple visits to specialists, treatments, et cetera.
5.40Michelle also explained that becoming Mark’s primary caregiver was ‘financially crippling’ as she had to sell her business to take on caregiving responsibilities and Mark had to draw on his superannuation.
5.41Inquiry participants also made clear that the involved level of care for rare and less common cancer patients often results in carers either having to give up full time work or significantly reduce their hours, and therefore earning potential.
5.42For example, Michael, whose daughter was diagnosed with neuroblastoma, told the committee that his family has gone from ‘thriving to basically living off the good will of others’. He described the significant financial and emotional impact of his family going from two incomes to one, after his wife became a full-time carer for their child:
We have suffered extreme financial hardship. We have gone from two wages to one. My wife is now a full-time carer to a dying child. I work 6 days a week, nearly 60 hrs a week, [to] support a mortgage and bills. I am being robbed of time away from my child when it is needed most!
Adequacy of the Australian Government Carer Payment and Carer Allowance
5.43Despite the availability of income support payments for carers, many inquiry participants considered these payments inadequate and difficult to access. For example, Megan, whose daughter Kira was diagnosed with stage 4 high risk neuroblastoma, expressed frustration over the eligibility of the Australian Government Carer Payment and the severe inadequacy of the Carer Allowance:
Centrelink deemed that Kira did not attract enough points for me to qualify for the Carers Payment. In short, she was not “sick enough” because her illness was not permanently disabling. So instead, I was offered the Carers Allowance, an amount so measly it didn’t cover the cost of her medications (even after the health care concession was applied) or her tube feeds. It didn’t cover the cost of petrol to shuttle her back and forth to hospital, or for parking at the hospital and it definitely didn’t make a dent in supporting us to cover our other household expenses.
5.44Megan, whose husband, Ken, was diagnosed with stage 4 inoperable pancreatic metastatic cancer in February 2022, also explained being initially rejected for the Carer Payment and Allowance because Ken was deemed to ‘not require sufficient care’.While she now receives the Carer Payment which helps supplement her part-time salary, their financial stability relies on this source of income.
5.45Beau, representing Australian DIPG Families, similarly conveyed the inadequacy of the Carer Allowance, and advocated for the payment to increase and eligibility to be widened:
Carer’s allowance of $70 a week for one parent is a joke. When two parents quit their jobs to care for and be with their dying child, this small amount of government funding is unsustainable to survive on. Such an amount should be increased and automatically awarded to the sole carers of terminally ill children upon diagnosis.
Geographical barriers
5.46The committee heard that outside of major metropolitan centres such as Sydney or Melbourne, and particularly in regional, rural or remote Australia, patients faced extra logistical and financial burdens, exacerbating challenges to accessing diagnostic and treatment services.
5.47Several inquiry participants emphasised to the committee that people living in regional, rural and remote areas of Australia experience disproportionately worse cancer outcomes compared to their metropolitan counterparts. For example, spatial analysis data submitted to the committee found ‘substantial evidence’ of geographical variation in incidence and survival of rare cancer types between 2007 and 2016. In particular, the data showed that ‘more disadvantaged, and rural/remote areas had higher incidence and poorer survival’.
5.48In addition, evidence to the committee outlined that Australians living in remote areas are 1.3 times more likely to die from cancer and have a lower 5-year relative survival rate compared to Australians in major cities.
Access to health care services
5.49Inquiry participants drew the committee’s attention to the exacerbated difficulties in accessing diagnostic and treatment services in regional, rural and remote Australia due to a maldistribution of health care services, specialists and relevant equipment.
5.50For example, the National Rural Health Alliance (NRHA) submitted that regional and remote areas struggle with GP access. Research in their submission suggested that 44 930 people residing in remote and very remote Australia cannot access primary healthcare services ‘within a 60-minute drive time of their home’. In addition, it noted that outer regional, remote and very remote residents utilise Medicare ’50 per cent less’ and experience ‘longer waiting periods to see a GP’ compared to residents in major cities and inner regional areas.
5.51Relatedly, the committee heard that specialist access in regional, rural and remote Australia can be limited as oncology specialists predominantly work in metropolitan regions. The Society of Hospital Pharmacists of Australia indicated that this can affect detection rates in areas without specialists or referral centres that can adequately screen and diagnose rare cancers.
5.52Further, Mr Shaun O’Connor, Co-Chair of Oncology and Haematology Leadership Committee from the Society of Hospital Pharmacists of Australia raised that a shortage in expertise, administering nurses and outsourcing pathways in regional or rural hospitals also limit access to treatment for patients in these areas.
5.53Regarding clinical trials, Cancer Trials Australia explained that participation can be limited due to the number of trials available and their location, causing travel burdens and ‘disproportionately affecting those who live outside of major cities’.
Travel, relocation and its costs
5.54Limited access to relevant oncology services for rare or less common cancers can force regional, rural and remote patients to travel and/or relocate.For example, Danielle and Tony, who are based in Taree made 132 trips and travelled 24,000 kilometres for their seven-year-old daughter, Halley, to receive treatment over a two-year period.
5.55The ramifications of travelling were clearly articulated by the NRHA, indicating its adverse impacts on patients because it causes:
… the need to take time off work, the inability to meet caring responsibilities for children or others, and the cost of the travel itself and associated accommodation. Travel also takes people away from their support networks and into potentially culturally unsafe environments. Hence, travel is associated with personal and financial burdens and these are felt disproportionately by rural people.
5.56These logistical and financial burdens were reflected by Mary who lives with borderline ovarian cancer. She submitted:
I travel over an hour (100 kms away) for local oncologist appointments, scans and chemo so can go this distance weekly … We can be away from home and friends for 2 to 3 months, we have had to shut our business down and rely on own funds plus disability allowance etc …
Patient travel and accommodation schemes
5.57Patient Assisted Travel Schemes (PATS) are operated at the jurisdictional level and are available in every Australian state and territory for the purpose of providing financial assistance for treatment related travel and accommodation.
5.58Ms Clare Crawford, Senior Director of Revenue and Hospital Financial Services from Canberra Health Services, explained that schemes can vary amongst states and territories as each have their own ‘eligibility, funding support and rates’.
5.59Cancer Council Australia provided valuable information to the committee in relation to state and territory PATS. The example below illustrates the discrepancies between schemes.
Table 5.1PATS comparison between New South Wales and Victoria based on cents per kilometre and accommodation
State or territory | Private vehicle | Accommodation |
New South Wales | 40 cents per km, no restriction on km travelled or maximum claim. No ability to claim tolls or parking. | Not-for-profit or Commercial $75 per night first 7 nights, $120 per night from day 8.
Private $40 per night, includes Airbnb bookings and staying with family/friends |
Victoria | 21 cents per km, irrespective of engine capacity or number of people in the vehicle. No restrictions on km travelled or maximum claim. Community transport services reimbursed at the rate charged or 20 cents per km. No ability to claim tolls or parking. | Commercial $45 per night each for patient and approved escort (over 18 years).
Private No subsidy. |
Source: Cancer Council Australia, Answers to questions taken on notice, 31 January 2024, pp. 1 and 2 (received 9 February 2024)
5.60Despite the existence of these PATS, many inquiry participants emphasised to the committee that they are inadequate in helping alleviate travel and accommodation costs.
5.61An issue raised by Cancer Council Australia was how these schemes, in most cases, function as a subsidy and therefore are not designed to cover care expenses. Ms Megan Varlow, Director of Cancer Control Policy at Cancer Council Australia explained the adverse consequences that can arise from this:
… lots of people with rare and less common cancers—and, in fact, people in regional areas with common cancers—don’t end up receiving the treatment that’s been recommended, because they can’t afford to travel and to stay somewhere and to receive that care.
5.62Some inquiry participants also highlighted that the majority of schemes do not cover travel and accommodation costs associated with accessing clinical trials. A patient reflected that ‘PATS does not cover trials so I can’t afford transport accommodation and rest of bills’.
5.63The importance of accommodation in accessing treatment, particularly for rural patients was underscored by Emma Phillips, the Executive Director of Can Assist, who considered accommodation the ‘gateway’ for rural residents to seek treatment and care.
5.64To address inconsistencies between schemes, Ms Varlow suggested:
From my perspective, there is a role for the federal government in supporting the states and territories to think about how the programs could be implemented in a more consistent way and to improve the level of support that they provide to people ...
Potential opportunities from utilising telehealth technology
5.65Many inquiry participants highlighted the potential benefits of utilising telehealth technology for regional, rural and remote patients, particularly in:
increasing access to GPs, pharmacy and oncology specialists;
increasing access to remote trials; and
upskilling regional, rural and remote workforces.
5.66Margaret Deerain from the National Rural Health Alliance commented that in-person consults are the ‘gold standard’, but where they are not possible, telehealth can help ‘augment’ in person services.
5.67For instance, The Society of Hospital Pharmacists of Australia submitted that ‘TeleChemotherapy’ would allow patients to access chemotherapy treatment and ‘comprehensive pharmacy care’ without the burden of travelling. It cited the Western Australia Country Health Service TeleChemotherapy Pharmacy Service as a current and nationally recognised example of delivering lower-risk chemotherapy treatment to regional, rural and remote patients using the ‘support of specialist metropolitan-based clinicians via telehealth services’.
5.68The Minderoo Foundation also indicated that telehealth technology enables better clinical trial access, regardless of geographic location, by linking hospitals and sites in non-metropolitan regions to larger hospitals in city areas. Kaye Hewson from the Australian Teletrial Program described their model’s impact:
Let me tell you about one patient: an anaesthetist living in Cairns who was diagnosed with a rare form of Hodgkin’s lymphoma. A clinical trial was his best treatment option, but it was only accessible thousands of kilometers away. The teletrial model connected the clinical trial site to the Cairns Hospital so he could access the trial locally. He is now at the end of his maintenance phase and in full remission and has been able to work throughout his treatment.
5.69Dr Wei-Sen Lam, the Medical Lead of Teletrials in WA Country Heath Service, also noted how their teletrial model offers upskilling and job generation to health workers via knowledge dissemination, education and support provided by regional clinical trial coordinators. He explained:
What we hope to do is have medical oncologists who are very passionate about delivering clinical trials to regional areas and have the RCCCs, the regional clinical trial coordinating centres, support those regional areas, upskill coordinators, find nursing staff that are passionate about clinical trials and upskill clinicians in that area so that we can have clinical trials in those regional areas.
5.70Mrs Ariane Hermann, Acting First Assistance Secretary from the Department of Health and Aged Care (the department) told the committee the department has invested $36.4 million towards specialist telehealth services and their delivery via non-government cancer organisations.
5.71While telehealth technology can provide benefits to patients outside of metropolitan areas, as evidenced above, Queensland Health raised in its submission that people in rural and remote locations may not have the equipment or skills to utilise this technology in addition to ‘reliable internet’ and cost.
Health workforce challenges
5.72Inquiry participants outlined the need to address health workforce shortages, funding issues and the emerging health workforce needs and skill requirements of the future – particularly to ensure equitable and quality care for rare and less common cancers are provided to patients.
Workforce shortage and funding issues
5.73As identified from previous inquiries, Australia’s health workforce faces several challenges, which can adversely influence the provision of quality care to patients. In the context of rare cancers, inquiry participants specifically highlighted two major workforce barriers to staffing levels and their subsequent impact on accessing diagnostic and treatment services:
workforce shortages across various specialist disciplines; and
short-term and unreliable funding of workforce and research positions.
5.74Cancer Australia explained that there is a ‘limited number of health professionals with specialist expertise in rare and less common cancers’ and the growing incidence of cancer cases and complexity of cancer care, amongst other factors, is placing heightened demands on the cancer care workforce.
5.75This sentiment was reflected by Mr Tim Murphy, General Manager of Blood Cancer Partnerships from the Leukaemia Foundation. He told the committee that the current workforce consists of ‘highly specialised, highly skilled people’ but there is an impending supply challenge, with a growing population and cancer incidence. He further noted that ‘at some point, there aren’t going to be enough clinicians to serve the population that we have’.
5.76In particular, multiple inquiry participants flagged staffing shortages amongst pathologists in Australia and their associated consequences on rare and less common cancers. Dr Thomas Walwyn, Staff Specialist in Paediatric Adolescent and Young Adult Oncology from the Royal Hobart Hospital, explained that rare cancers need adequate pathology staffing in terms of ‘expertise and also headspace’ in particular.
5.77Dr Melanie Wuttke, Head of Medical Oncology at the Royal Hobart Hospital reflected on the downstream impact of pathologist shortages on patients at her hospital. She explained:
We’ve got four full-time equivalents at the Royal Hobart Hospital ... they’ve had some leave over Christmas, as everyone does, and they now have 600 cases which they need to process ... The flow-on effect from that is that it’s taking three, four or five weeks to get pathology results back … The pathology department is actually starting to get calls from patients who are begging them to get their reports through.
5.78In addition, many inquiry participants identified unreliable funding of workforce positions as a major challenge to staffing levels. For example, in the context of childhood cancers, the Sydney Children’s Hospitals Network explained that ‘a significant issue facing all children’s cancer services is that only a proportion of staff members are funded by permanent, recurrent funding’. As discussed in Chapter 6, this leaves a significant proportion of staff with positions funded by ‘soft funds’ such as philanthropic donations and other short term funding mechanisms such as grants.
5.79It detailed the range of serious consequences this has on the workforce, as well as patient outcomes and care:
This has a negative impact on staff retention, staff satisfaction, service planning and staff turnover. This reduces the availability of treating practitioners required across the health care disciplines (eg oncology pharmacists, pharmacy technicians, specialist nurses etc) required for paediatric oncology and particularly has a negative impact on being able to provide supportive care (eg social work, psychology, allied health, care navigators etc) to children with cancer and their families.
5.80From a patient’s perspective, an inquiry participant described the adverse impacts of high staff turnover throughout their father’s cancer treatment, indicating:
… there were several interfaces with, and inputs from, the oncologist, general practitioner, hospital / emergency staff, palliative care staff and others, coupled with high staff turnover which made it almost impossible to maintain consistency in treatment and resulted in wasted time / effort in re-briefing new staff everyday (if not multiple times per day from the different organisations).
5.81Similarly, as outlined in Chapter 6, in the context of research, Professor Matthew Dun outlined that research teams operate on soft funding grants, which he suggests can often lead to:
… the loss of talented researchers either to overseas positions or, alternatively, to industry, emphasising the importance of stable and sustained funding mechanisms.
5.82To address some of the challenges discussed above, a few inquiry participants emphasised the importance of sustained funding to critical specialist and research positions to ensure patients have access to diagnostic and treatment services.
5.83The department referenced the government’s $810 million funding towards future health education and training programs which aim to ‘alleviate current workforce shortages’ and make them future-proof to service Australia’s long-term health needs.
5.84The Medical Workforce Reform Advisory Committee’s National Medical Workforce Strategy (the Strategy) 2021-2031 has identified concerns in Australia’s medical workforce, including an ‘imbalance between specialist disciplines’ and ‘subspecialisation and generalism’. The Strategy seeks to address these concerns by providing a number of detailed actions.
Emerging specialties and skill requirements
5.85Evidence to the committee made clear that the skill and speciality needs of the health workforce for rare and less common cancers is rapidly changing, with the emergence of advancements in genomics and molecular science.
5.86For example, the committee heard that molecular biology, which does not traditionally feature in oncology training, is beginning to play a substantial role within the diagnosis and treatment of rare and less common cancers as specific cells are targeted rather than a whole-body approach, as discussed further in Chapters 2 and 3 of this report.
5.87Dr Richard Mitchell, from the Sydney Children’s Hospitals Network, observed that the Zero Childhood Cancer Program is fostering an emergence of new specialities, and DrEmily Mould from the Children’s Cancer Institute, similarly reflected that the program is fostering a new workforce including curation scientists. Dr Mould elaborated that:
From a Zero and a Children's Cancer Institute perspective, we have also produced a new workforce to support the diagnostics delivery of the Zero program. We now have a whole team of curation scientists, which we didn't have before, to help interpret this data. We've got computational biologists and engineers who have built systems to be able to cope with the data that we're creating.
5.88Telix Pharmaceuticals underlined that whilst advancements in cancer treatment and management, such as radiopharmaceuticals, are exciting, it is important that investments are made into the health workforce to meet these demands. For instance, it elaborated that Australia has over 500 nuclear medicine specialists, but not all have theranostic (a combination of diagnostics and therapy to produce targeted and personalised treatments) training.
5.89In the context of childhood cancers, Ms Anastasia Glushko, Stakeholder Engagement Manager from the Childrens Cancer Institute, outlined that advancements from programs like the Zero Childhood Cancer Program highlight the need for further educating the clinical workforce regarding changing treatment approaches and molecular biology.
5.90To address these advancements and skill requirements, the VCCC Alliance have advocated for genomic education to be embedded in medical training programs and ongoing professional development.
5.91Under the Australian Cancer Plan, a key ambition is to produce an ‘engaged, capable and future-focused cancer workforce’, with a specific five-year goal to ‘assist the sector to support all cancer care practitioners to work at the top of their scope of practice, increase retention and ensure ongoing access to continuing professional development’.
Priority Populations
5.92For population groups such as First Nations or CALD communities, barriers to diagnostic and treatment services for rare and less common cancers can be more greatly pronounced affecting the quality in care they receive.
5.93The committee acknowledges that CALD and First Nations communities are diverse population groups and therefore have varied experiences. The evidence presented in the section below does not reflect all CALD or First Nations experiences and is limited to the evidence received over the course of this inquiry pertaining to these population groups.
First Nations people and communities
5.94The committee was made aware that First Nations people experience inequity of outcomes for rare and less common cancers, and cancers more broadly, compared to non-Indigenous Australians. As outlined in Chapter 1, First Nations people are disproportionately impacted by rare and less common cancers compared to their non-Indigenous counterparts.
5.95Cancer Australia outlined these disparate outcomes:
cancer is the leading cause of death amongst Aboriginal and Torres Strait Islander people;
Aboriginal and Torres Strait Islander people have a lower relative survival rate for cancer overall; and
Aboriginal and Torres Strait Islander people have a lower relative survival for specific rare and less common cancers such as stomach and oesophageal cancer.
5.96To address First Nations cancer outcomes, the Australian Government has funded the development of the First Nations Cancer Package which invests $197.9 million to the Aboriginal Community Controlled Health Organisations (ACCHOs) sector. NACCHO explained that the program will ‘lay the foundation for scalable, national solutions to improve cancer related outcomes for all Aboriginal and Torres Strait Islander people’.
Racism and discrimination
5.97Systemic and institutional racism can impact the level of appropriate, timely and respectful cancer care to First Nations people, including their willingness to seek out healthcare.
5.98Australian Genomics drew the committee’s attention to data from the Australian Reconciliation Barometer which indicated that the proportion of Indigenous Australians reporting racial discrimination by doctors, nurses and/or medical staff has increased since 2014 (11 per cent in 2014 to 20 per cent in 2022).
5.99NACCHO cited that racism and discrimination within mainstream health services ‘creates a culturally unsafe environment’ and discourages ‘accessing or completing cancer treatment’. They pointed out that not completing care can contribute to increased morbidity and mortality rates. For example, it submitted that:
… compared to other Australians who require hospitalisation, Aboriginal and Torres Strait Islander people are four times more likely to leave hospital before completing treatment. The rates of self-discharge are highest in very remote regions in Australia, where Aboriginal and Torres Strait Islander people self-discharge from hospital, against medical advice, at 9.1 times the rate when compared with other Australians.
The importance of culturally safe health services
5.100Several inquiry participants underscored the critical importance of culturally appropriate care for First Nations people and its impact on health service engagement. Culturally safe care, regarding support after diagnosis, for First Nations patients is also discussed in Chapter 4.
5.101NACCHO submitted that Aboriginal and Torres Strait Islander people have shown preference for accessing care via ACCHOs. It explained that more than 50 per cent of its members prefer ACCHO services and will often ‘bypass mainstream services to access an ACCHO, where they are confident that their cultural safety is guaranteed’.
5.102To ensure continuity of care for Aboriginal and Torres Strait Islander patients with a cancer diagnosis, NACCHO identified the need for:
… collaborative arrangements with and between treatment facilities, governments, localised primary healthcare networks, external support agencies, and the ACCHO sector. This includes available funding to employ an Aboriginal and Torres Strait Islander workforce into cancer support officer or care coordinator positions within the ACCHO sector.
5.103Consequently, NACCHO recommended collaboration and partnerships between ACCHOs and cancer facilities to ensure culturally safe continuity of care, and that the Australian Government introduce an agreement with state and territory governments to ensure culturally safe care is provided across all levels of the healthcare system.
5.104The Australian Cancer Plan includes embedding cultural safety as a priority and focus across its strategic objectives and shorter-term ambitions.
5.105However, NACCHO raised concern over the current workforce shortage within the ACCHO sector as data they cited has indicated:
a 20-30 per cent decrease in full time employment in ACCHO clinical staff per 1,000 population; and
a 50 per cent increase in the number of unfilled positions since the start of 2020. They further elaborated that:
Many ACCHOs in rural and remote locations rely on transient general practitioners to provide primary health care which means Community members often find it difficult to build trust and rapport with visiting general practitioners.
5.106According to NACCHO, whilst the First Nations Cancer Package ‘provides a foundation’ to developing and delivering culturally safe services, it advocated for additional funding to alleviate gaps in areas of accessing early diagnostic and treatment services, Aboriginal and Torres Strait Islander health workforces, survivorship support and culturally safe palliation services.
Language literacy
5.107In addition to health literacy challenges discussed earlier in this chapter, language barriers can further undermine access to diagnostic and treatment care. For example, Queensland Health submitted that people with language barriers may lack the confidence to seek health information in their own language, which can, amongst other factors, lead to a ‘delayed cancer diagnosis’.
5.108Sandra, who was diagnosed with a midgut neuroendocrine tumour, reflected on the impact language literacy has on making informed health decisions, submitting:
I have never seen NETS education materials available in a language other than English … I have never heard of any in-hospital support workers or translators who could interpret NET information or help with doctor consults … I have three university degrees and struggled to make sense of NET language. How do people of low literacy or ESL background acquire any meaningful information? ... Lack of understanding of your medical condition makes a mockery of the notion of informed consent …
5.109Regarding treatment, The Society of Hospital Pharmacists of Australia explained that CALD information resources for chemotherapy and supportive non-chemotherapy medications are not currently available. It suggested that the development of these resources would support ‘important conversations and help improve cultural perspectives on hospitals and cancer treatment options’.
5.110The Children’s Cancer Institute indicated that there is limited funding available for the research and development of appropriate tools and resources for CALD and Indigenous populations to improve equity of access. It flagged that responsibility for the development of such resources currently lies with hospitals and district level services rather than having a ‘national approach’.
5.111The department noted that the government provides ‘Free Interpreting Services’ for patients with limited English language proficiencies while Cancer Australia and Cancer Council Australia have published resources in multiple languages.
5.112NeuroEndocrine Cancer Australia also indicated that they provide ‘Explainer Videos’ of neuroendocrine cancer in Arabic and Mandarin, but advocated that ongoing government funding is needed to produce more culturally and linguistically diverse resources.
Lower participation in diagnostic and treatment services
5.113CALD and First Nations communities were recognised as underrepresented in cancer screening, clinical trials and research initiatives.
Screening
5.114CALD and First Nations communities were reported as being under screened and exhibited lower rates of engagement in cancer screening initiatives, respectively.
5.115The VCCC Alliance raised to the committee that ‘there have been no substantial efforts’ to address barriers in accessing ‘molecular testing’ and ‘targeted therapies’ for Aboriginal and Torres Strait Islander and CALD communities.
5.116Australian Genomics submitted that ‘Indigenous-led, developed or co-developed cancer screening and service pathway models’ will help to address access and equity barriers to health services.
Clinical trials
5.117Associate Professor Anna Boltong, Chief Executive Officer of Ovarian Cancer Australia commented that barriers to participating in clinical trials can be pronounced in priority populations like Aboriginal and Torres Strait Islander people. She further noted that English reading and speaking requirements of a trial can prevent participation.
5.118Another barrier to participation raised by Mrs Tiffany Boughtwood, Managing Director of Australian Genomics, is the availability and granularity of data to help indicate the number of Indigenous Australians accessing interventions and their outcomes. She reflected that this leads to inequity in opportunities for Indigenous Australians ‘to benefit from advancements in genomics and in therapies’.
5.119In their submission, Australian Genomics explained that clinical trials in Australia are not required to collect and report data on numbers related to screening, enrolment and clinical trial completion of Aboriginal and Torres Strait Islander people. Of the data that is captured, it submitted that between 2006 to 2020, under 0.8 per cent of registered clinical trials focused on Aboriginal and Torres Strait Islander people. This issue is further discussed in Chapter 7 of this report.
5.120The Trans Tasman Radiation Oncology Group advocated for more research initiatives focused on increasing clinical trial diversity, as they see this as a mechanism to participation inequity.
5.121Mrs Boughtwood also commented on the importance of incorporating governance frameworks for clinical trials and considering issues related to ‘data sovereignty, Indigenous knowledge and benefit sharing with trials’, particularly with genomics.
Committee view
5.122The committee was presented with substantial evidence outlining the myriad of barriers that can undermine equitable access to diagnostic, treatment and other cancer care services amongst rare and less common cancer patients. The committee considers that reducing these inequities must be prioritised to alleviate adverse impacts on a patient’s cancer care journey and their subsequent outcomes.
Health literacy
5.123The committee recognises that health literacy is crucial to a patient’s ability to self-advocate and make informed and empowered decisions about their own health, and rare and less common cancer journey. It also notes that the lack of information regarding rare cancers, as discussed in Chapter 4 of this report, can further reduce a patient’s ability to self-advocate and make decisions.
5.124The committee acknowledges that health literacy pathways and information for rare and less common cancers, including neuroendocrine cancers are limited due to their complexity and non-standard nature. The committee believes that improving the health literacy of patients is paramount to achieving equity in access to diagnostic and treatment services for rare and less common cancers.
5.125The committee welcomes the objectives of the Australian Cancer Plan, particularly its goals to strengthen health literacy for cancer patients and consumers. The committee urges the Australian government to appropriately prioritise and deliver on these key actions. In particular, developing appropriate resources relevant to rare and less common cancers should be prioritised.
Financial toxicity
5.126The committee heard a considerable amount of evidence regarding the significant out-of-pocket expenses associated with the diagnosis and treatment of a rare or less common cancer. The committee understands these expenses, coupled with changing financial circumstances of a patient and/or their family, can cause notable distress amongst affected individuals. The committee considers it unacceptable that some patients forgo potentially life-saving treatments due to exorbitant costs.
5.127As discussed in Chapters 2 and 3, the committee is of the view that the Australian Government should ensure rare cancer patients and families are not faced with prohibitive out-of-pocket diagnostic and treatment costs.
5.128The committee is also cognisant of the various indirect costs patients and families are often burdened with. The committee particularly notes the significant financial impacts on families when carers, particularly parents of children diagnosed with rare cancers, have to abandon their paid work to become full‑time carers of their sick loved one. The committee notes the evidence it received from patients and families about their experience of the current payment levels and eligibility criteria for the Carer Payment and Carer Allowance.
Recommendation 25
5.129The committee recommends that the Australian Government consider a review of the eligibility criteria and adequacy of the Carer Payment and Carer Allowance with a view of ensuring that people caring for cancer patients have access to appropriate support.
Tyranny of distance
5.130The issue of access to health services, particularly specialised health services in regional, rural and remote Australia has been a longstanding problem. The committee understands that the uneven distribution of clinicians and healthcare providers pose increased logistical and financial burdens on rare and less common cancer patients located outside major metropolitan centres. The committee is concerned that cancer outcomes remain far worse for communities living outside major metropolitan areas.
5.131The committee acknowledges that patient assisted travel schemes are available in each state and territory for the purpose of providing financial and accommodation assistance. Yet, the committee remains alarmed by the evidence inquiry participants raised, particularly pertaining to variations between state and territory schemes, inadequate subsidy amounts and the exclusion of most schemes to support patients participating in clinical trials. The committee urges Australian, state and territory governments to prioritise greater consistency, and review subsidy amounts under these schemes to help further address geographical variations.
5.132The committee recommends that state and territory governments reform patient assisted travel schemes with a view to:
create more consistency in scheme offerings across all jurisdictions;
increase financial assistance; and
expand schemes to include travel and accommodation costs for clinical trial participants.
Telehealth
5.133The committee notes that telehealth technology cannot eliminate travel for diagnostic testing or treatment delivery, nor can it replace in-person healthcare delivery altogether. However, the committee believes that the strategic and appropriate use of telehealth technology in health care service delivery can significantly benefit rare and less common cancer patients residing outside of metropolitan areas. The committee is convinced that this would increase access to multidisciplinary teams while enabling patients to remain close to home and their support networks.
5.134The committee welcomes the Australian Government’s $36.4 million investment in specialist telehealth support services, which includes $4.4 million in funding to Rare Cancers Australia.
5.135The committee recommends that Australian health services continue to invest in, and extend the use of telehealth and teletrial technology and infrastructure, to ensure adequate and timely delivery of diagnostic, treatment and support services, particularly for people living outside metropolitan areas.
Building sustainable healthcare workforces
5.136The committee recognises that structural workforce issues in the Australian health sector have remained a persistent challenge for some time now, and building a sustainable healthcare workforce is a complex problem. Based on the evidence received, the committee understands that unsustainable funding models undermine current and future healthcare and researcher workforces from delivering timely and quality health services. Problems with staff retention, turnover, demand, and shortages must also be addressed.
5.137The committee is aware of the National Medical Workforce Strategy 2021-2031 (the Strategy) which seeks to ensure equitable access to healthcare services, improve workforce distribution, enhance training pathways, and promote diversity within the medical workforce.
5.138The committee believes it is important that the actions recommended by the Strategy are monitored and implemented, as equitable access to rare and less common cancer diagnosis and treatment cannot be achieved with an under resourced and ill-equipped health workforce.
5.139The committee recommends that the Australian Government prioritise and monitor the implementation of the recommendations from the National Medical Workforce Strategy 2021–2031, and ensure it addresses the needs of rare and less common cancer patients, including neuroendocrine cancer patients.
5.140The committee is also cognisant that the professional healthcare landscape is changing, with many new specialisations and fields emerging such as molecular curation. To accommodate this, and to ensure rare and less common cancer patients receive the best care and treatment into the future, the committee agrees that targeted training and education opportunities, and sustained funding models, are required to retain skilled staff, foster knowledge awareness and up-skill professionals working in these spaces.
5.141The committee recommends that the Australian Government, in partnership with state and territory governments and the higher education sector, review the emerging educational and workforce skill needs in relation to precision oncology, genomics, molecular curation and theranostics.
5.142The committee recommends that state and territory governments provide sustained funding and participation incentives for staffing positions and training opportunities for medical professionals and researchers interested in specialising in rare and less common cancers, including neuroendocrine cancers.
Culturally appropriate care
5.143The committee is concerned that First Nations people encounter additional barriers when accessing and engaging with healthcare services. The committee considers it unacceptable that First Nations communities are disproportionately impacted by rare and less common cancers compared to non-Indigenous Australians.
5.144The committee welcomes the Australian Government’s $239 million investment towards capacity and capability building of ACCHOs and ensuring cancer care is culturally safe and accessible to First Nations people within mainstream healthcare. The committee believes it is paramount this investment appropriately addresses gaps within First Nations cancer care, particularly regarding access to early diagnosis and treatment, shortages in First Nations health workers, survivorship support and culturally safe palliation services.
5.145The committee recommends that the Australian Government continue to engage with and support Aboriginal Community Controlled Health Organisations to ensure the ongoing and expanded delivery of culturally safe and appropriate and health and supportive care for First Nations people.
Increasing participation of First Nations and CALD communities
5.146Evidence presented to the committee highlighted disparities in participation among First Nation and CALD communities for screening, research and clinical trials. To ensure equity of access to diagnostic and treatment services for these priority populations, the committee acknowledges the importance of increasing engagement and participation rates.
5.147The committee recommends that the Australian Government, in collaboration with Aboriginal Community Controlled Health Organisations, develop initiatives to increase participation rates of First Nations people in cancer screening, research and clinical trials.
5.148The committee recommends that the Australian Government partner with organisations representing culturally and linguistically diverse communities to develop initiatives to increase participation rates in cancer screening, research, and clinical trials.
Language and literacy
5.149The committee believes that inclusive health and language information related to rare and less common cancers will facilitate better health outcomes within the Australian community, particularly amongst CALD communities. Therefore, providing accessible and tailored information to overcome literacy and language barriers is paramount.
5.150The committee believes it is important that health and language resources for CALD communities need to be guided, driven and implemented by CALD and rare cancer organisations to create trust, increase literacy and empower patients.