MS treatment access in Australia is currently a deeply emotional and urgent topic for many people living with multiple sclerosis. In this interview of the MS-Perspektive Podcast, Deanna Renee and Rachel Kerr share what it means when access to a treatment that works may suddenly feel uncertain.
Both guests have lived with multiple sclerosis since the age of 17. Both know what it means to grow up with MS, to hear frightening predictions, to try several medications, and to keep building a life anyway. They also know how powerful lived experience can be when it is taken seriously in healthcare, research, and policy.
The conversation focuses on MS treatment funding in Australia, especially the uncertainty around PBS access to Ocrevus and Kesimpta, and the role of Briumvi as a newer treatment option. MS Australia reported on 1 July 2026 that Ocrevus and Kesimpta were at risk of being withdrawn from the Pharmaceutical Benefits Scheme, the Australian system that subsidises many medicines, because of government-driven price reductions. Briumvi was listed on the PBS for adults with relapsing-remitting MS in January 2026.
This episode is not medical advice. Treatment decisions in multiple sclerosis should always be made together with your neurologist or healthcare team.
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Introduction – Getting to Know Deanna & Rachel
Deanna, could you start by introducing yourself and telling listeners a little about who you are beyond MS?
Deanna Renee, Lived Experience Leader & Advocate, Creative Communicator, Allied Health Professional and Board Director:
My name is Deanna Renee. I have been living with multiple sclerosis since I was 17 years old. That means MS has been part of my life for almost two decades.
But I am much more than MS. I am an artist, an advocate, a mental health worker, a friend and a partner. There are many different parts of me, and I think that is true for all of us. We are never only one thing.
Rachel, could you also introduce yourself and share a little about your own life beyond MS?
Rachel Kerr, Multiple Sclerosis Advocate & Ambassador; keynote speaker:
I am Rachel, and I live in central Queensland in Australia. Like Deanna, I was diagnosed with MS at 17. In a couple of months, I will have lived with MS for 20 years.
Beyond MS, I have a lovely husband and two children who seem to grow taller every time I blink. I enjoy all the mum things, the life things, and watching my kids grow and change.
Rachel, when did MS first become part of your life, and what do you remember most clearly from that time?
Rachel:
MS first became part of my life in 2006. I was 17 and doing my final high school exams when I went completely blind. My eyesight had been getting worse over several weeks, but tests did not pick it up at first.
One Saturday, after work, I asked my brothers to check whether I had vacuumed properly because I could not see the floor. That was the moment when everyone realised something was wrong.
My boyfriend at the time, who is now my husband, took me to hospital. Compared with many other MS diagnosis stories, mine was quite fast. At the time, it was a shock. Looking back, I see it as a blessing, because many people spend years trying to get answers.
Deanna, looking back on your own MS journey, what has helped you most to keep going through difficult phases?
Deanna Renee:
What has helped me most is working on my mental health and relying on support. I have a partner I lean on a lot. I also have my own MS posse, friends who live with MS and really understand it.
Beyond that, I have a wider circle of friends who do not have MS. Advocacy work and the online MS community have also been incredibly important. They have helped me feel connected and less alone.
Understanding – Lived Experience as Expertise
Rachel, you and Deanna are both members of the Lived Experience Expert Panel (LEEP) with MS Australia. What does “lived experience expertise” mean to you?
Rachel:
For many years, lived experience was not taken into account first. It often felt like an afterthought.
Now, with the Lived Experience Expert Panel at MS Australia, people with MS have a seat at the table. That means we are not just dealing with decisions after they have already been made. We can help shape policy discussions from the beginning.
For me, lived experience expertise means using what we have been through to make things better for the next generation of people with MS.
Deanna, at what point did you feel that your personal MS story could also become a voice for others?
Deanna Renee:
My diagnosis journey was rough. I was diagnosed at 17 and was more or less sent away with the information. My mum was told over the phone. Back then, there was no Instagram, TikTok or easy access to lived experience stories online. I felt completely alone.
I grew up in a rural area, and the lack of information affected my mental health very badly. The only image of MS I had seen was someone who was heavily disabled in a neurologist’s office. As a 17-year-old, I thought, “That is my future. I need to give up on everything now.”
People around me also encouraged me to give up dreams. I was told not to go overseas, not to have children, and not to expect a partner. I think people were trying to help, but the stigma was huge.
At around 25, I started sharing online because I heard that others were still receiving diagnoses without enough information or hope. It began as an outlet and grew into advocacy. Today, people tell me that I am one of the first people they see online who lives with MS, uses dark humour, and shows that life can still be full, fun and approachable.
Rachel, what do you think people often misunderstand about MS when they only look at it from the outside?
Rachel:
People often see one person with MS and assume every person with MS will be the same. They usually mean well, but they lead with frightening stories about someone they know who became very unwell.
If you meet someone with MS, please do not start with horror stories. Let that person tell you what MS is like for them.
MS is different for everyone. Some people need mobility aids, and some do not. Some people have visible symptoms, and many symptoms are invisible. What helps is asking, “How can I support you?” instead of assuming what the future will look like.
Deanna Renee:
It is like telling someone who just bought a car, “I know someone who crashed a car.” It might be true, but it is not helpful.
When I was 17, I heard many frightening stories, and they affected how I saw myself and my future. I took fewer risks. I accepted less than I deserved. That is why representation matters so much.
Deep Dive – Treatment Access, Uncertainty & Real-Life Impact
Deanna, many people with MS in Australia have been asking: “Will I still be able to stay on the treatment that works for me?” How have you personally experienced this uncertainty?
Deanna Renee:
There is a pricing dispute between pharmaceutical companies and the Australian government around Ocrevus and Kesimpta. The concern is that, if no agreement is reached, these medications could be removed from the Pharmaceutical Benefits Scheme, or PBS.
The PBS is the system in Australia that helps make many medicines affordable. Without PBS subsidy, people may face much higher out-of-pocket costs.
For me, this has been extremely stressful. I currently take Kesimpta, and the thought of moving from a manageable co-payment to thousands of dollars out of pocket is terrifying. The costs could rise from around 30 Australian dollars per injection to about 2,200 Australian dollars every 28 days if access changed. That would sum up to more than 20 thousand dollars per year. Who has that chunk of extra money? Most people won’t.
So it has been traumatic for many people in the MS community. Some people are reporting pseudo-relapses, some have real relapses, and others are deeply frightened about what may happen next.
Rachel, when you hear discussions about medication funding, co-payments or switching treatments, what does that bring up for you as someone living with MS yourself?
Rachel:
MS is uncertainty at its core. Adding extra uncertainty that does not need to be there is extremely difficult.
For me, Kesimpta is my sixth treatment. It is the one that, at this point, is safe, effective and much better tolerated than previous medications. I have not had new lesions while on it, and slowing progression is a huge deal.
The fear is not only, “Will I have my medication next month?” It is also, “Will the next medication work? Will it be safe? Will I tolerate it? Will it take years to find another option?” That is why people are so hesitant to lose access to something that is currently working.
Deanna Renee:
I have also tried six medications before finding one that works well for me. I have not had new lesions while on Kesimpta. The side effect profile is much better for me, and I do not want to lose something that is keeping me stable.
Deanna, for many people with MS, an effective treatment is not just a medication. It can mean stability, work, family life, independence, or simply less fear of the next relapse. What do you wish decision-makers understood about that?
Deanna Renee:
I wish decision-makers would look at the people behind the policy. MS is not just a number in a spreadsheet. It affects the person living with the disease, but also their children, partners, families, friends and workplaces.
There is already so much fear with MS because you never know when a relapse might happen. Effective treatment can mean stability. It can mean being able to work, care for children, stay independent and live with less fear.
Some people also have limited treatment options because of risks such as PML, a rare but serious brain infection linked to the JC virus in certain treatment contexts. That makes individual treatment choice even more important.
Rachel, Briumvi may be an option for some people with relapsing-remitting MS, but switching treatment is still a very personal medical decision. What questions would you encourage people to ask their neurologist before feeling pressured into any change?
Rachel:
I am very fortunate to have a good neurologist and a strong partnership in my health journey. That is what people need: a real conversation with their neurologist.
The key point is that treatment decisions should be between the person with MS and their medical professional. They should not be made only on the basis of cost.
There is no one-size-fits-all treatment for MS. If there were one medication that worked brilliantly for everyone and was well tolerated by everyone, we would all be delighted. But that is not reality.
Briumvi is a welcome additional option for some people. However, it is not a generic version of Ocrevus or Kesimpta. It belongs to the anti-CD20 treatment class, but it is still a different medication. Each treatment may suit different people for different reasons. MS Australia describes Briumvi as an intravenous infusion for adults with relapsing forms of MS, while Kesimpta is given as a subcutaneous injection, meaning under the skin.
Before switching, people may want to ask:
- What are the benefits and risks for my individual situation?
- What is known about side effects?
- How will the treatment be given?
- What monitoring will I need?
- What happens if it does not work for me?
- What alternatives are available?
- How will this affect my work, family life and daily routine?
Deanna, you created a Community Advocacy Kit with letter templates, contact details, and even a “Low Spoons” version. For listeners who are tired, overwhelmed, or simply don’t know where to start, how can this kind of resource make speaking up feel more manageable?
Deanna Renee:
Everyone is burnt out. The cost of living is high. The world feels overwhelming. When I first read the news, even with my clinical background, I found it hard to understand quickly. So I wanted to make the information easier and more accessible.
I created infographics, templates and a resource kit people could use. Rachel and I worked on templates together. There are versions for different energy levels, including low-spoons options.
“Spoons” comes from Spoon Theory, a way many people with chronic illness describe limited energy. A low-spoons version means a person can still take action even when they are exhausted.
The kit helps people write their personal story, find their Member of Parliament, contact the Health Minister and share information on social media. It turns a huge task into smaller steps.
Support & Action – Using Your Voice
Rachel, for listeners who may feel too tired, unsure, or intimidated to speak up: what would you say to encourage them to take one small advocacy step?
Rachel:
The advocacy kit makes it easier because it shows what you can do even in five minutes. On one difficult day, I sent just one email from bed. I made sure it went to Health Minister Mark Butler, because that felt like the most important one to send.
You do not have to be at your best outwardly to make a difference. You can send one email, share one post, or tell one person why this matters.
Also, take care of yourself. Sometimes advocacy is like putting on your oxygen mask on an airplane. You may need to step back, breathe, and then return when you can.
Rachel, if a listener takes only one action after hearing this episode — for themselves or someone they love — what would you hope it is?
Rachel:
Do one thing that helps your voice be heard. That could be writing to a minister, contacting your local representative, sharing an advocacy post, or encouraging someone else to speak up.
And if you are not living with MS yourself, your voice still matters. Family members, partners, friends and colleagues can also help show decision-makers that treatment access affects whole communities, not only individuals.
Outlook
Deanna and Rachel, briefly: which development in the field of MS would you like to see in the next five years?
Deanna Renee:
The cure, of course. But realistically, I would like to see treatment decisions not being taken away from us. I also want more consumer voices in policy decisions.
People with lived experience should be included in research, policy and government decision-making. We need to be in the room when decisions about our lives are being discussed.
Rachel:
Remyelination is huge for me. Myelin is the protective layer around nerve fibres that is damaged in MS. Remyelination means repairing that damage.
We have already seen so much progress in MS treatment over the years. Things once thought impossible became possible. I hope repairing damage is the next step.
Closing
What would you like to leave listeners with today?
Deanna Renee:
Hope and realism can exist at the same time. Small acts of advocacy can create meaningful change. Even if you wonder whether your letter will matter, it probably will. Each voice adds to the next one until decision-makers cannot ignore us.
Rachel:
Keep using your voice. Sometimes it feels like no one is listening, but tiny voices can start snowballs of change. Keep sharing your story. Someone out there may be going through something you have already survived, and your story might become a roadmap for them.
How and where can interested people find you online?
Deanna Renee:
You can find me as @CircularBlooms on Instagram, TikTok and Facebook. The advocacy kit is linked in my bio and in the show notes.
Rachel:
I mostly join in through Deanna’s pages. She does the cool online work, and I come along for the fun parts.
This episode is a reminder that lived experience is expertise. And when people with MS speak together, their voices can become impossible to ignore.
See you soon and try to make the best out of your life,
Nele
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