Why medicines acess matters for lupus
A breakthrough treatment cannot improve a life if the people who need it cannot access it.
For people living with lupus, delays can mean ongoing disease activity, irreversible organ damage and lost opportunities to protect long-term health. In the first edition of Lupus Voice Australia: Advocacy in Action, we look at how the lupus patient voice is entering national conversations about medicines access and Health Technology Assessment reform—and why early, credible advocacy matters as the lupus treatment pipeline develops.
Putting Lupus into the Medicines Access conversation
On 21 May 2026, Lupus Voice Australia participated in Medicines Australia’s patient-community webinar, Access Denied: The Future of Medicines Access in Australia, presented by Medicines Australia CEO Liz de Somer.
The discussion focused on growing barriers and delays affecting access to innovative medicines in Australia, the pressure facing the Pharmaceutical Benefits Scheme and the need to progress reform of Australia’s Health Technology Assessment system.
During the question-and-answer session, LVA raised the implications of delayed access to emerging lupus therapies.
We highlighted that disease activity and organ damage can continue while people wait for effective treatment—and that some of this damage may be irreversible. For younger patients in particular, the consequences may be carried for decades. Liz de Somer acknowledged lupus as a historically underserved disease and noted the growing excitement among clinicians about the developing treatment pipeline. She also encouraged patient organisations to work alongside clinical experts, observing:
“Patient voices give them the why, and clinician voices give them the rationale and impetus.”
That response was important.
It placed lupus directly within a national medicines-access discussion and reinforced a model of advocacy that LVA believes can be especially powerful: lived experience explaining the real-world consequences of delay, alongside clinical expertise explaining the medical evidence and urgency.
What is Health Technology Assessment?
Health Technology Assessment—usually shortened to HTA—is the process used to assess the clinical value, cost-effectiveness and broader benefits of medicines and other health technologies.
A medicine may be approved as safe and effective by the Therapeutic Goods Administration, but that does not automatically mean it will be subsidised through the Pharmaceutical Benefits Scheme.
It must also move through assessment and funding processes, including consideration by the Pharmaceutical Benefits Advisory Committee. These processes can sound technical, but their consequences are deeply personal.
They influence whether people can access a treatment, how long they may wait and whether the system adequately recognises outcomes that matter to patients—including quality of life, disability prevention, treatment burden, carer impact, reduced organ damage and the ability to participate in ork, family and community life.
For lupus, these questions are becoming increasingly important. As potential treatments progress through development, Australia needs an access system capable of recognising both clinical evidence and the realities of living with a complex, unpredictable and potentially organ-damaging disease.
Bringing Patient Voice into National Reform
On 9 July 2026, Lupus Voice Australia and MyFlareUp participated in a national consumer roundtable with the Hon Mark Butler MP, Minister for Health and Aged Care, focused on HTA reform, medicines access and the future of the Pharmaceutical Benefits Scheme.
The roundtable brought together a large coalition of patient and consumer organisations at a time when important decisions are being made about how Australia assesses, values and funds medicines.
One of the clearest messages from the discussion was that patient organisations should not be consulted only after proposals have already been designed. They should be recognised as informed partners capable of helping shape better policy. Minister Butler told the organisations present:
“Your groups can and should play a really, really central role in this.”
He also said that, when reform proposals reach senior government decision-makers, an important question will be:
What is the patient’s view?
The Minister described the patient view as the “truest lodestar” because patients are ultimately the people the PBS exists to serve.
For LVA, this creates both an opportunity and a responsibility.
Meaningful representation requires more than attending meetings. It requires preparation, policy understanding, balanced contributions and the ability to explain how national decisions affect the everyday lives of people living with lupus.
It also means ensuring that lived experience is treated as evidence—not simply as a personal story added after the major decisions have already been made.
Building the relationships that make advocacy possible
Effective advocacy is rarely achieved by one organisation working alone.
Lupus Voice Australia’s involvement with the Global Remission Coalition is helping connect the Australian lupus community with international discussions about remission, treatment goals and what meaningful improvement looks like from the patient perspective.
These conversations are valuable because clinical measures do not always capture everything that matters to people living with lupus. Patient experience can help broaden understanding of remission and improvement to include fatigue, pain, cognitive symptoms, treatment burden, participation in daily life and confidence about the future.
L-R: Liz de Somer, CEO Medicines Australia, Melinda Barret, Vice Chair MyFlareUp, Deidre Mackechnie, EO Australian Patient Advocacy Alliance
LVA has also met with Deidre Mackechnie, Executive Officer of the Australian Patient Advocacy Alliance, for a valuable discussion about Australia’s patient-advocacy landscape and the importance of coordinated, constructive engagement across chronic and complex health conditions.
The meeting provided an opportunity to learn from a more established advocacy network, discuss LVA’s development and consider how emerging organisations can build credibility without duplicating work already being done. APAA’s approach emphasises coordinated patient contribution to government and health-system decision-making—an approach closely aligned with LVA’s commitment to collaboration rather than competition.
What advocacy in action means for Lupus Voice Australia
These are early steps, but they matter.
Medicines-access decisions affecting the lupus community will not wait until Lupus Voice Australia has finished building every part of the organisation. LVA needs to develop the knowledge, relationships and systems required to contribute credibly before new therapies reach critical assessment and funding decisions.
Our work will include:
- following HTA reform and developments affecting the PBS
- strengthening relationships with clinicians and access advocates
- building knowledge of HTA, PBAC and reimbursement processes
- participating in relevant national policy discussions
- connecting with Australian and international patient organisations
- helping bring the real-world experiences and priorities of people living with lupus into those conversations
Advocacy in action means more than being present.
It means arriving prepared, asking the questions that matter and helping decision-makers understand the human consequences of policy choices.
Patients should be heard because we live with the consequences of healthcare decisions every single day. Lupus Voice Australia will continue working to ensure that the experiences of Australians living with lupus are part of the evidence—and never an afterthought.
Newsletter July 2026
Something we’ve been hearing frequently in our regular Dragon Talk community sessions is that people with chronic illness or autoimmune conditions often leave medical appointments with more questions that answers, about their treatment plan.
Medical appointments can involve complex symptoms, treatment options with different side-effects, a lot of uncertainty and deeply personal priorities – all of which need to be addressed in the short timespan of an appointment.
Understanding the information is only half of it
Going in, you could be presented with new information, like medication options and side-effects while you need to not only absorb the information to understand how it can impact your body, but also raise any concerns you may have about it at the same time.
It is also common for people with chronic health or autoimmune conditions to feel unwell at the time of the appointment, making asking the right questions and discussing any concerns with your specialist even harder.
The very real challenge is having your concerns, lived-experience and treatment goals included in the decision-making process that happens during an appointment.
Shared Decision-Making Working Group
Dr Michael Axtens introduced this important topic and was the inspiration for MyFlareup forming a a Shared Decision-Making Working Group.
The goal of the SDM group is simple – to help people understand the difference between ‘informed decision-making’ and ‘shared decision-making’ in conversations with their healthcare providers.
While receiving information is important, true shared decision-making involves far more.
The SDM working group is currently exploring the development of a practical patient resource that will:
- Explain the difference between informed decision-making and shared decision-making in plain language
- Provide examples of respectful phrases patients can use to help bring their concerns and priorities to the forefront of the conversation
- Support people living with chronic conditions to take a more active role in decisions about their care
Shared decision-making is not about challenging clinicians.
It is about improving the patient’s voice and communication options, so that clinical expertise and lived-experience can work together.
At MyFlareUp, this is central to our work: helping people living with autoimmune and chronic health conditions communicate more clearly with healthcare providers, access more personalised care, and feel better equipped to participate in decisions that affect their own health and wellbeing.
Thanks to Dr Charmaine Jones and Fay Baudains (MyFlareUp), Maya Joshi and Laurie Axford (Community and Patient Preference Research, CaPPRe) and Melinda Barrett (Lupus Voice Australia) for contributing to discussions in the SDM Working Group meeting on 16 June 2026.
From pre-clinical research to a new medication being listed on the PBS, patient advocacy expert Cathy Sertori talks about the steps involved to get the medicine to the community.
Ann Single (CEO, Patient Voice Initiative) talks to us about the importance of Collective Advocacy at what it means for people with Lupus.
Estela Mata, from MATA Patient Advocacy & Support, talks about the importance of having a voice and being able to build a trusting relationship with your healthcare provider.
