MS Australia is a national not-for-profit organisation dedicated to improving the lives of those affected by multiple sclerosis. Its remit includes supporting research for treatments and cures, advocating for policy change, and championing the needs of the MS community
Multiple sclerosis (MS) is the most common acquired chronic neurological disease affecting young adults, often diagnosed between the ages of 20 and 40, and, in Australia, affects over 33,000 people; three times more women are affected than men. As yet, there is no cure.
In MS, the body’s own immune system mistakenly attacks and damages the myelin sheath around the nerves, affecting the brain, spinal cord, and optic nerves. As the myelin breaks down – a process called demyelination – patches of nerves become exposed and then scarred, which render the nerves unable to communicate messages properly and at risk of subsequent degeneration. The resulting symptoms of MS can vary widely from being completely invisible, yet debilitating, such as pain and fatigue, to loss of motor function.
From diagnosis to management
MS is a complex disease, and diagnosis is not always straightforward. While for some, a diagnosis can be made in a few quick steps, others can wait for a long period of further testing from the time of their first symptoms until they are officially diagnosed.
The 2024 ‘My Diagnosis’ report produced by MS Australia (MSA) revealed the prolonged time to diagnose MS. The average time to diagnosis has reduced from five years and almost four months in 1997-2000 to just under four years in 2017-21.
While this reduction in diagnosis times is good news at a population level, there remain individuals who are still experiencing lengthy diagnosis times. This underscores the critical need for quicker diagnostic methods and early and effective management strategies for MS, which we know can significantly improve quality of life.
Progress in MS research and treatments
Research into the causes of MS is rapidly advancing, with researchers exploring a range of genetic, environmental, and behavioural factors that may contribute to the development of the disease, while also focusing on strategies to prevent MS and create pathways to cures.
The role of the Epstein-Barr virus (EBV), a common virus that many individuals contract during their lifetime, is emerging as a key area of focus, with studies suggesting it may trigger the onset of MS. MSA established the EBV in MS platform in late 2024 to better understand the role of EBV in the development of MS and ongoing disease, and the potential to target EBV to prevent or treat MS.
On the therapy front, the landscape for MS treatment has significantly evolved in recent years. While disease-modifying therapies have been available for some time, the focus is now shifting towards developing more effective treatments for progressive MS. MSA, along with MSWA, is funding the first-ever adaptive clinical trial for Australians living with MS, called PLATYPUS. PLATYPUS is the Australian extension of OCTOPUS, which is testing repurposed drugs to promote neuroprotection or repair of myelin in progressive MS.
Newer therapies, including BTK inhibitors, are also showing promise in targeting specific immune pathways to better manage relapses and slow disease progression with reduced side effects.
Advocacy for targeted policy measures
MSA advocates for targeted policies to improve research funding, diagnosis, and healthcare, aiming to enhance care and quality of life for people with MS.
Increased funding for MS research: Research is the cornerstone of progress, driving the discovery of new treatments, better management strategies, prevention, and ultimately, pathways to cures. MSA is calling for sustained investment in MS research to foster innovation from fundamental science through to clinical trials.
Establishment of a national MS biobank: In MS, we need to prevent, halt, and reverse neurological damage and disability. One powerful tool to support this goal is a biobank – a collection of biological samples linked with health information – to advance medical research.
MSA is calling for the establishment of a national MS Biobank to support studies to improve early detection and diagnosis, measure treatment response, and fuel research into progression. It would also enhance understanding of the ‘pre-MS’ period and improve monitoring of risk factors.
Improving access to MS Nurse care: Currently, one-third of Australians living with MS do not have access to life-changing MS Nurse care and have consistently worse health outcomes. MS Nurse care reduces the need for other, more costly health professionals and prevents emergency department presentations and hospital admissions.
In collaboration with the Menzies Institute for Medical Research and MS Nurses Australasia, MSA is advocating for a National MS Nurses Strategy and a pilot project to develop and evaluate a best practice model of MS Nurse care. This strategy aims to increase MS Nurses, improve access, and enhance training, employment, and care models, ultimately leading to better health outcomes for people living with MS and their families.
Driving change for people with MS
Addressing the multifaceted challenges of MS – from diagnosis to management – requires a concerted effort from all stakeholders. The current state of research is promising, however, to truly make a difference, we must advocate for targeted policy measures that support people with MS. Through these efforts, MSA is dedicated to improving the quality of life for all Australians living with MS, ensuring they receive the care and support they need at every stage of their journey.
