We MatterMyeloma Matters
A comprehensive analysis of the economic, social and human burden of multiple myeloma in Australia
Prepared by HTAnalysts for Myeloma Australia • March 2026
Contents
Joe's Story
A Life Lived in Advocacy
Joe was 36 when he was diagnosed with myeloma after returning from a camping trip with sudden, severe rib pain. A CT scan revealed extensive bone damage, with his neck and spine described as looking like "Swiss cheese." In the short time since his diagnosis, Joe has undergone six lines of treatment, experienced a pulmonary embolism that caused a heart attack, endured multiple bouts of pneumonia, and suffered seven spinal fractures from his neck to his lower back.
Joe has channelled his experience into advocacy, supporting others with myeloma and finding purpose in helping those facing the same journey. Just five short years since diagnosis, at the age of 41, Joe has now entered end of life care. This report is dedicated to Joe and all people living with myeloma. They are who we are striving to find the cure for.
We are a leading voice on the global myeloma stage. A cure is within reach NOW, but it will not happen without sustained investment. The myeloma community in Australia and around the world deserves nothing less.
In the spirit of reconciliation, this report acknowledges the Traditional Custodians of Country throughout Australia and their connections to land, sea and community. We value Aboriginal and Torres Strait Islander cultures, traditions, views and ways of life, and pay our respects to Elders past and present.
A Message from Myeloma Australia
Multiple myeloma may be considered an uncommon cancer, but its impact is profound and widely underestimated. This report shows that the economic impact of multiple myeloma in Australia is $7.16 billion each year, making it one of the most costly cancers on a per person basis. For the more than 22,000 Australians living with multiple myeloma, this incurable disease brings lifelong treatment, repeated relapse, and a heavy physical, emotional and financial burden.
Crucially, most of this cost sits outside hospital and pharmaceutical budgets. It is borne by patients and carers through lost quality of life, premature mortality, reduced workforce participation and ongoing caregiving. These impacts are rarely captured in traditional health system reporting, yet they define the lived experience of multiple myeloma.
Despite accounting for only around 1% of cancers, multiple myeloma has one of the lowest survival rates, the highest annual healthcare cost per patient, and a disproportionate wellbeing impact. The cost of inaction is measured not just in dollars, but in lives and independence lost.
This report also points to a clear path forward. Earlier diagnosis, equitable access to the most effective treatments, and a coordinated national investment in research and data can deliver better outcomes for patients and strong returns for society.
Myeloma Australia believes Australians living with multiple myeloma deserve better. This report provides the evidence base for a national coordinated response to change the future of this disease.
Multiple Myeloma at a Glance
Multiple myeloma (MM) is an incurable form of blood cancer that arises from plasma cells in the bone marrow. It leads to various health complications including a weakened immune system, bone destruction and reduced kidney function.
The Cost of Multiple Myeloma
The total annual economic burden of multiple myeloma in Australia is $7.16 billion, spanning direct healthcare costs, indirect costs to patients and carers, and profound wellbeing costs.
Introduction
Multiple myeloma is a relapsing-remitting cancer, meaning people may experience periods where the disease is under control (remission), followed by times when it becomes active again (relapse). Treatments are often delivered continuously, either actively treating MM or as a maintenance program when the disease is stable.
MM has one of the lowest life expectancies of all blood cancers. Around 27% of Australians diagnosed with MM die within 18 months of diagnosis. The 5-year relative survival is only 61%. Over the last few years, the MM growth rate has increased by approximately 30%.
The number of people being diagnosed with MM each year is expected to almost double by 2043. Nearly 10% of people diagnosed with MM are younger than 50, highlighting the need for greater awareness among younger patients and their doctors.
Methods
This report focuses on the healthcare and non-healthcare costs experienced by people living with MM, their families, and the Australian Government. Costs and savings were estimated for 2024. Data were sourced from the PBS, Medicare Benefits Schedule online, and relevant literature where appropriate. Costs sourced from the literature were inflated to 2024 dollars using the RBA inflation calculator.
The MM prevalence is estimated based on an extrapolation of incidence data and survival rates, drawing on data from Myeloma Australia's national patient and carer database, complemented by insights from leading experts in the field, including the MSAG. This approach contrasts with other published sources, which may substantially undercount patient numbers because they depend on registries that can be incomplete, may not capture cases in rural and regional areas, and often lag in reflecting improvements in survival rates.
The approach used in this analysis relies on published sources for each of the included costs, prevalence and utilisation, rather than primary data collection. Results are therefore limited by the availability and quality of the underlying data.
Direct Costs
- Costs incurred prior to diagnosis
- Cost of MM treatments
- Cost of autologous stem cell transplant
- Cost of disease and symptom management
- Cost of allied health services
Indirect Costs
- Travel and accommodation for care
- Productivity loss
- Cost to carers
Wellbeing Costs
- Quality of life loss of the patient
- Premature mortality
- Quality of life loss of the carer
Direct Costs: $1.41 Billion
Direct costs represent actual financial and health system expenses associated with diagnosis, treatment, ongoing disease and symptom management, and allied health services.
Average specialists consulted before haematologist referral
People with MM under 70 who receive an ASCT
Indirect Costs: $160.9 Million
The indirect costs are the non-health system costs for patients and their caregivers, associated with travel and accommodation for care, productivity loss and caregiver burden.
Wellbeing Costs: $5.60 Billion
Wellbeing costs are the largest component of the total burden, encompassing quality of life loss for patients and carers, and the costs of premature mortality. These are the costs least often captured in traditional health reporting.
Our community continues to grow in numbers and in voice. For too long, the myeloma community has had no voice. We are changing that and so will this report. They cannot be ignored. We need action and we need it fast.
Comparisons to Other Conditions
While the total burden of MM may appear smaller than more common cancers due to lower prevalence, on a per-patient basis, myeloma has the highest cost of any cancer in Australia. The vast majority of the MM burden falls outside direct healthcare spending, meaning it is routinely underestimated in conventional analyses.
Underestimating the burden of MM by focusing primarily on healthcare costs distorts prioritisation and resourcing across the system, leading to inadequate funding for patient and carer supports as well as lower levels of research investment. This also undermines eligibility for income protection, carer payments, travel and accommodation assistance, and workplace flexibility programs — leaving patients and families to absorb sustained financial and quality-of-life losses.
I lost my husband Tony to myeloma ten years ago. Now I've been diagnosed with it and facing an uncertain future. Whilst I am strong and optimistic, I have to be. We as a community demand action and permanent change.
I put my name and my voice to raise awareness throughout the Australian community. Slowly but surely more people are understanding the challenge that myeloma brings to our community. The impact is huge. The report shows this.
Recommendations
The findings of this analysis support three key recommendations as crucial to improving MM treatment and care in Australia. Focusing on Greater Awareness, Access to Treatment, and Research Funding will not only improve the lives of those living with MM but also strengthen processes across the healthcare system.
Greater Awareness
A major gap in the MM landscape is the lack of public and clinical awareness of MM as a disease overall. Despite advances in treatment, MM remains less recognised than other cancers. As a relatively rare cancer, accounting for 1% of all cancers in Australia and often presenting with non-specific symptoms, diagnosis is often delayed until the late stages.
Modelling shows that in the year before diagnosis, people with MM experience excess costs totalling $24.4 million. These figures highlight the urgent need to shorten the time to diagnosis by improving GP and allied health understanding of the early symptoms of MM, and by increasing public awareness of potential warning signs.
Greater awareness of early-stage conditions such as MGUS and Smouldering MM is essential, as they can progress silently, with minimal to no symptoms. Early identification enables closer monitoring, timely intervention, and the potential to delay or prevent progression to active MM.
Action: A national awareness program should prioritise GP and allied health training and community education to support early recognition and referral.
Access to Treatment
Significant gaps in access to treatment limit Australians' ability to benefit from the latest and most effective therapies. Although treatment options for MM have rapidly evolved, delays, restricted use due to PBS listing constraints, and inconsistent clinical practice persist. As a result, many patients cycle through older, less effective therapies before accessing newer options that could offer longer remission, better quality of life, and improved survival.
A comprehensive review of current treatment sequencing is recommended to determine optimal treatment pathways. MM treatments account for 11% of total PBS spending on cancer medicines, highlighting the need to ensure these resources deliver the greatest benefit.
Earlier access to advanced therapies can reduce premature mortality, minimise quality of life loss, and decrease overall treatment and symptom management costs. This is particularly important given the total wellbeing cost ($5.6 billion) and the direct costs of treatment and disease management ($1.3 billion) estimated in this analysis.
Research Funding
Myeloma Australia's MSAG estimates that a coordinated, national investment of $100 million would be sufficient to find a cure for MM. Such an investment would reap immeasurable benefit for the MM community and result in significant returns for the Australian Government and society more broadly.
Despite major advances in treatment and survival, MM remains an incurable cancer, highlighting a critical gap in Australia's research landscape. Progress towards a cure is delayed by the absence of a unified national plan, limited Australian-specific data and the incomplete use of real-world evidence such as the Myeloma and Related Diseases Registry (MRDR) to support decision-making.
Additional funding would enable world-leading Australian clinicians to participate in more investigator-led trials, strengthen participation in international research collaborations, translate discoveries into practice, and enhance data collection.
The National Myeloma Strategy (2026-2031)
The National Myeloma Strategy (2026-2031) has been developed in direct response to the findings of this economic analysis. It is a structured five-pillar reform agenda designed to reduce mortality, reduce avoidable system cost, and build a coordinated national pathway towards a cure. The project return materially exceeds the required investment.
| Pillar | Investment | Expected Annual Savings | 5-Year Potential Savings |
|---|---|---|---|
| Cure Pathway Program | $100 million | $222 million | $1.1 billion |
| Best Therapy First Reform | $3 million | $39 million | $195 million |
| National Awareness & Early Diagnosis Strategy | $12 million | $19.3 million | $96.5 million |
| Patient and Carer Support Reform | $5 million | $8 million | $40 million |
| Data and Registry Reform | $12 million | $14 million | $70 million |
| TOTAL | $132 million | $302 million | $1.5 billion |
The Five Pillars
Coordinated National Cure Pathway
Premature mortality represents the single largest economic impact. The Cure Pathway Program supports investigator-led trials, precision medicine acceleration, a national trial coordination hub and structured sequencing research.
Best Therapy First: Treatment Access Reform
Delayed access to optimal therapies leads to preventable relapse cycles and higher hospital utilisation. Policy reforms include a 12-month PBAC sequencing review and reduction in TGA/PBS approval lag by 30%.
Early Diagnosis and Awareness Reform
MM symptoms are often non-specific, leading to delayed recognition. Late diagnosis contributes to renal impairment, fracture risk and avoidable admissions. Actions include GP education modules and referral pathway reform.
Specialist Nursing and Carer Support Reform
Access to specialist myeloma nurses is inconsistent nationally. Carer productivity loss is $45.4M annually. Program components include specialist nurse expansion and regional travel subsidy support.
National Data and Registry Reform
MM data remains incompletely linked across clinical and reimbursement systems, limiting policy precision. Objectives include 95% registry coverage, real-time MBS/PBS linkage, annual outcome reporting and AI-enabled analytics. A 1% improvement in treatment sequencing efficacy equates to $70 million in five-year benefit.
Conclusion
Multiple myeloma continues to impose a substantial burden on individuals, families and the Australian healthcare system with a total economic impact of approximately $7.16 billion per year. Despite notable advances in treatment that have improved survival and quality of life, MM remains an incurable, chronic disease requiring lifelong management.
Direct costs, including those associated with diagnosis, treatment and symptom management, exceed $1.0 billion annually. When indirect costs of more than $160.9 million and wellbeing costs exceeding $5.6 billion are also considered, the overall economic impact increases dramatically.
The results also present a clear opportunity: investments that lead to improved quality of life and reduced mortality in people with MM can lead to significant savings for patients and society. Even modest improvements, achievable through earlier diagnosis, timely access to new therapies, and targeted research, could deliver tens to hundreds of millions in value annually.
The cost of inaction is too great. MM requires a national, coordinated response focused on awareness and early diagnosis, equitable access to treatment, and investment in research and data collection.
Abbreviations
Myeloma Australia thanks Johnson & Johnson and GSK for their financial support for this research, given without any pre-condition or editorial input.