Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS and their families and carers, together with leading clinicians, researchers, and advocates.
Welcome to The Raw Nerve. I’m Rohan Greenland, the CEO at MS Australia and co-host of this podcast. Today, we’re taking a deep dive into a new report commissioned by MS Australia, prepared by the Menzies Institute for Medical Research in Hobart, that reveals a disturbing spike in the prevalence of MS in Australia. To discuss this report, today we have two authors, eminent health economist, Professor Andrew Palmer, and a global authority on MS, highly-respected researcher, and neurologist, Professor Bruce Taylor. Also joining us is a tireless advocate for MS, the President of MS Australia and a person living with MS, Associate Professor Des Graham.
First, we’re going to go to Andrew. Andrew, what does this report show? What’s new in the numbers of people in Australia living with MS?
We looked at a couple of things in this report. The first one is the number of people, otherwise known as the prevalence of people, living with MS in Australia in 2021. Now, what we found is there are about 33,000 or just over 33,000 people living with MS in Australia in 2021. This is alarming because it’s an increase of more than 7,000 people, nearly 8,000 people, from our last estimate four years ago in 2017. And this number, this increase seems to be accelerating over time.
The other thing that we looked at-
Yep, I was going to ask you this one, what about the costs? What does this mean for the costs associated with MS in this country?
The other thing we looked at in the report was the total cost to Australia or in Australia associated with people with MS. What we’ve seen is an increase from $1.75 billion from 2017, increasing now to over 33… Oh, sorry. Over $2.5 billion for the total cost of MS in Australia. That’s an increase of more than 30%.
That’s a huge spike. Where are those increases felt? I mean, I understand, the report actually shows us significant out-of-pocket expenses for people living with MS, but also there’s a big cost to government as well, the direct healthcare costs.
Yeah, so the costs, I mean, they’ve increased mainly because the number of people has increased, the number of people with MS has increased over that time period. Of course, there are also inflationary pressures that have caused that increase in costs. Where we’re seeing these changes in costs or the big drivers in the costs are the direct costs of treating MS, so costs of going to hospital, costs of medication, costs are going to the doctor, all those things that the government has to pay for.
On the other hand, we’ve also seen changes in indirect costs. So, that’s that cost due to lost productivity. Could be due to early retirement or decreases in your job status or not being as productive at work when you’re actually at work because of illness or because you’re absent from work because you’re sick.
So, on one hand, what we’ve noticed is that the cost, the direct costs have increased, that’s that cost driven mainly by the cost of medications used to treat MS. So, the really good medications are really good medications these days to manage MS and stop and slow the progression of MS. They do cost the government and to a certain extent, patients something. But yeah, the government reimburses most of those costs, which is great. So, those costs have increased over time. But there’s been a decrease in the indirect costs. So, those costs due to lost productivity.
So, what we’re thinking is that by treating people better with these disease-modifying therapies that decrease the rate of progression of disability, we’re actually able to keep people longer in the workforce and help keep them more productive while they’re at work.
A small silver lining. Bruce, you’ve done a lot of interviews over the last 24 hours or so. The big question that’s been put to you is why. Why are we seeing this dramatic spike in prevalence in MS in Australia?
Well, there are a number of factors that are potentially involved in this, and what we have to say is that the actual truth balls are not known because it’s hard to specifically say this is caused by such and such. But what we can hypothesize and actually support by research is that there have been changes in global or behaviors in Australia and in lifestyle factors over the last 20 years, which are largely or likely to largely drive these associations.
We know that the causation of MS is complex. There’s no single cause for MS. We know that it has got to do with genetics, which is not going to change over time. Basically who you are, where you live is important. The further you live away from the equator, the greater risk of getting MS is and that’s likely due to an environmental factor which is most likely ultraviolet radiation exposure and subsequently vitamin D.
The other factors that are associated with risk of MS are smoking, adolescent obesity, and also the Epstein-Barr virus. Now, we’re not likely to see changes in the impact of Epstein-Barr virus because it’s already well-established and ubiquitous in our community.
The final factor which is really important is as MS is largely or predominantly a disease of women or females, the reproductive habits or behaviors of people or Australian women have also changed dramatically over the last 30 years. So, if you take those factors together, obesity has dramatically increased in Australia and the increase in obesity directly now mirrors the increase in MS prevalence. It’s likely that increasing adolescent obesity is one of the direct drivers. Smoking in women, although it never reached the heights of smoking in men, the peak in female smoking was later than in men, and the rate of fall has been less than seen in male rates of smoking. So, smoking is likely to contribute.
The other things are that women in Australia are having their children later and are having less children. We know that for every pregnancy the female has, have reduced their risk of getting MS by about 25%. So, if you see that people are now having an average, the first child, at around 30 rather than 24 and instead of having three, four, five children as they did in the 50s, 60s, they are having one or two children. That is a dramatic effect on the potential risk of MS.
The final important thing is that we had a significant change in our sun behavior practice over the last 30 years because of the decreasing risk of getting melanoma and skin cancer. We’ve had a very successful slip-slop-slap program and this has been reflected in the decreasing rate of skin cancer, but there’s still a major problem but it’s also actually associated with an increased risk of getting conditions such as MS. As we know that reduced sun exposure is one of the risk factors for getting MS and we know that just simply replacing vitamin D, which is a direct concept of the sunlight exposure, is probably not the answer.
So, if we look at those five factors together, we know we can potentially explain this increasing risk. And the other important thing about these is many of these are modifiable. There are things we can do to change this risk.
The spike we’ve seen in MS cases in Australia, it’s not unique to Australia. It matches a couple of studies, I think, that has been done in Australia by yourself in the Greater Hobart area and Newcastle. But I understand there are other countries around the world which are also seeing similar spikes. So, what’s happening there? Is it the same issue that are happening here?
If you look at a map of the world and look at obesity rates and then compare that to areas where… On changes to obesity rates and compare that to the areas where you’re getting increasing MS prevalence or reported increased MS prevalence, they match very closely. The United States is a classical example. The Middle East, particularly countries like Saudi Arabia, Iran, where obesity, and other countries such as Mexico and in Europe, every prevalent study of MS we see where there are repeated measures shows an increase. And so MS is increasing worldwide. The Atlas of MS has shown that this is happening worldwide and it can’t be local factors that are reported. It has to be factors that are actually at the population level and obesity is one of those. Smoking is one of those. Reduced sun exposure is another one of those. And also again, globally, the change in the way of reproductive behaviors in women. So, all these factors are not exclusive to Australia, they are worldwide.
Des, for MS Australia, the sharp increase in prevalence has really brought into focus our advocacy campaign. What are we advocating for and what can government in particular do to work with us to address this quite alarming increase in prevalence of MS?
Well, congratulations to them and thank you to the Menzies for their report. I think the report demonstrates what we’ve known for some time, that it demands further investment into research and into supporting people living with MS. I think clearly with the burden of cost around $2.5 billion, it is ridiculous to think that the government will not engage with MS Australia to support further research into MS, particularly looking, we’re looking for the cure, obviously, that’s the golden bullet. But we also want to recognize that we can improve the quality of life for people through the National Disability Insurance Scheme and in supporting them in their activities of daily living.
The critical point, I guess, for government is to fund us for the research but also recognize through the NDIS that only one-third of people with MS actually access the National Disability Insurance Scheme. And so I actually think the numbers that this report has shown us in terms of cost of out-of-pocket for people is actually under-reported because there are a number of well-documented cases where people just simply cannot get access to the National Disability Insurance Scheme because they’ve got blockages in the process, they don’t have good advocates, and as a result, they end up supporting themselves, or their carers support them.
So, I think in summary, the report demands attention and the government really now needs to partner with research institutes. It needs to partner clearly with MS Australia as the sort of iconic and well-respected institution that it is. And it also needs to progress the investigation or the review of the National Disability Insurance Scheme. And as I said, it seems difficult to understand why, with the numbers that are outlined in this report, the government will not pay it some attention.
Thanks, Des. Another question for Andrew. Andrew, I was really intrigued by the report, for a number of reasons, but when we talk about 2.5 billion or 2.449 billion, I think it was, that’s a tremendous cost to government. But you have said in that report that that’s a conservative figure and probably an underestimate.
Yeah, so we did inflate our figures, the cost figures per person from 2017 estimates that we made. So, we used a very conservative inflation rate, it may even be higher. What we’re doing at the moment is in the process of redoing the whole survey from scratch. So, later this year, we’ll be sending out surveys to several thousand people who have MS and we’ll be asking them precisely what are their costs again at this point in time. So, while our current-
And you think that’s currently to be a much larger number once that more detailed analysis is done?
I think it will, yeah. Yes. And I’m going to do a typical politician-type trick here, and you ask me that question, I’m going to answer a question that I want to answer.
What we also noticed is that, as we know, that MS is a progressive disease, so I can start off with no disability and go through mild to moderate, and then severe disability over the course of time. Those rates depend on the type of MS and the treatment that people are receiving.
What we discovered was that people with no disability have much lower costs than people who progress on to have mild, moderate and severe disability. So, people with MS who have no disability have annual total costs of about 33,000 per year. People with mild disability, that increases to around $60,000 per year per person. If you have moderate disability, it goes up to about 83,000 per year. And if you have severe disability, which essentially means the person is in a wheelchair, has severe problems walking, that goes up to about 123,000 per person per year. So, anything, any kind of interventions or treatments or management programs that can stop people from that progression of disability has a potential to have a huge impact on the costs of MS.
Rohan, can I just add, can I just add in there, I mean, the US has a Pathways to Cure report and I think it’s globally recognized that, as Andrew’s pointing out, primary intervention, early intervention is critical in terms of not only saving an enormous dollar cost, but it’s critically important in terms of allowing people to live as far as possible our normal activities of daily living life. And so we can’t just measure this in dollars, as is important as it is, but in terms of the quality of life for people.
And I think, again, I think, recently we gave an award in fact that Bruce and… Attended to a lady down in Tasmania who I’ll call Jilly. She had a wheelchair and she was quite proud of her new wheelchair. And I said, “Did you get this through the NDIS?” And she said, “No.” I said, “Oh, who’d you get it through?” And she said, “Well, actually,” she told me, “I’m too old for the NDIS so I cannot access it.” So, the way that she got her wheelchair, which was a $21,000 wheelchair, was she fundraised part of it. And then MS Plus, which is a service provider in the eastern states, provided the funding for the other half which they’d gone out and fundraised for.
So, there’s lots of scenarios around that. And so the cost of this disease is often silent and hard to capture, but what is obvious is people living with the disease are continuing to tell MS Australia we need more support.
Thank you. And I think, Andrew, too, the financial impact on people living with MS is enormous. And I think you found the average out-of-pocket costs for services was around 8,000 to $9,000. I assume there’s a range too. And for people with more severe disability, that escalates enormously.
Sure, sure. So, the direct costs that people have to pay themselves are out-of-pocket costs, that was averaging about 9,000 per person. On the direct cost to the government and community, there are about 25, 30,000 per person. There are costs associated with nursing home care, that’s of 6,000 to 9,000 on average per person. There are informal carer costs. So those costs to people, they’re not paid carers, but family and friends who, for example, have to take time off work to take their spouse or their father or their mother or their daughter to see the doctor or to look after them at home. They range up to nearly 8,000 per person.
These are very significant costs. And of course, we know that people on lower socioeconomic status have trouble accessing the NDIS in the first place, so it really poses quite significant burdens on them.
Bruce, if I go to you and turn to EBV. You mentioned EBV. It’s one area where the government, where in fact it was the previous government and under Health Minister Greg Hunt, did invest a substantial amount, $18 million, for MS EBV research. What is the promise around EBV?
Well, the promise around EBV is that EBV is now known to be an obligate risk factor. You don’t get MS if you’ve not been exposed to EBV. Now, EBV’s Epstein-Barr virus. It’s the virus that causes glandular fever and it’s ubiquitous. 90-plus percent or 95% of the population has been exposed to this virus. Many people are completely unaware that they’ve been exposed. They had a childhood viral infection before they’re eight or two, which is mild. We know that if you haven’t had EBV, your risk of MS is infinitesimally small. If you’ve had EBV, the timing of the infection’s important. If it’s early on in life, you still increase your risk of getting infection. But if you have it later in life and get a glandular fever, it pushes up your risk of infection by 1.5 to twofold.
So, EBD’s an important risk factor as it’s obligate and you can’t get MS without having EBV. If you prevent people getting EBV, you could potentially prevent MS. Now, obviously all this talk about new medications and cures is fantastic, but the ultimate cure is prevention. If you can stop people from getting the disease, everything else becomes unnecessary.
So, EBV is a really interesting thing. Can you prevent EBV by vaccination? And/or if you’ve got EBV, can you reduce the effect of EBV on your immune system to prevent MS developing or progressing? So, those are two really important questions.
Now, the problem with any vaccination is that vaccinations are not without risk, as we’ve all heard through COVID, that the COVID people do get reactions to Epstein-Barr vaccinations. And we don’t have an effective EBV vaccine at the moment, but there are vaccines that are being developed.
And the question is who should be vaccinated? Now the people, if we had a universal vaccination program and it was incorporated in the childhood vaccination programs, we need to be sure that the the risks of the vaccine are less than the risk of the disease. Because MS, even though we talk about the 33,000 people and 2.5 million people worldwide, MS is still a relatively uncommon disorder. It’s not like diabetes or asthma or allergies or cardiovascular disease. It affects one in 700 people in Tasmania. Therefore, your risk of your vaccine has got to be, at the community level, has got to be better… The vaccine has got to be better than the disease, the risk of that vaccine. Similarly, if you looked at people who are at high risk of MS, that is the group who will probably be the most likely to be vaccinated or being treated for EBV and there’s a number of research projects which we are currently developing or submitted for funding through the scheme that Des has mentioned. And these should make a big difference.
But the problem with this is that to do a trial or Epstein-Barr virus vaccine or Epstein-Barr virus treatment is very expensive. An average drug trial in MS will cost you 500 million to a billion dollars to do for a pharmaceutical company. We’re talking about getting grants of $2 million, which means you do everything on the absolute minimum that you can do to try to answer. And that is if you want to look at where the potential bang for your buck is in preventing or curing MS, greater research funding for EBV would be the number one thing I would be advocating for.
Great. Well, I come back to this point that I heard someone say, that as we move forward in various areas, whether it’s Vitamin D or EBV or remyelination, there’s not going to be one single silver bullet, but a range of silver bullets that will get us to effectively to a cure or cures over time. Is that your view?
I think that you got to separate between cure and prevention. Now, if you’re talking about cure, yeah, I think cure is a really, really… The goal is cure. But cure is a very hard thing for a complex disease. We haven’t been able to cure any of these diseases, like rheumatoid arthritis, SLE, diabetes, we can’t cure them because it sets up a… Or we haven’t been able to cure them as yet. So, cure is hard, but it will be a combination. I have no doubt we’ll be looking at reducing EBV. We’ll be looking at immune modulation and we’ll be looking at bone marrow transplantations. We’ll be looking all of these things together. But it will be a complex solution there. As I said, prevention may be an easier barrow to push. And again, it’s that if you have less people getting the disease, you will eventually remove the disease paradigm from our community. We will have people who will still have the disease and we still need to focus on the cure and making their lives better. But there are two sides to this call.
Prevention’s going to be a very important discussion point at a global summit on Pathways to Cure, which is going to be held in the first week of May. Des, you’re leading the MS Australia delegation to this summit. It’s going to bring 200 leading thinkers and particular organizations that fund research. What do you think will come out of this summit? Some people have said to me that this is potentially at a game-changing summit, that we’re going to align research and develop global collaborations and platforms focusing on critical issues and that to get consensus on those critical issues. Do you think we can look to this important summit as a real milestone in the history of research and advances into putting MS where we want to put it, behind us?
Look, I think it’s an incredibly exciting opportunity. I think over the last couple of years, MS Australia has done really well in its collaboration with the UK, with Canada and with the US. But this summit will bring people from all around the world, researchers in particular sharing their knowledge. So, the outcome, I think, is we will end up with a global collaboration that sets up a range of platforms. Bruce has mentioned a couple. There’s the EBV research platform, there’s Platypus and Octopus, which we really want to participate in, which is the repurposing of drugs. And we’ve asked government to assist us in rolling out that research here. So, I think the opportunity is limitless and I think the enthusiasm will be evident and we will come away with a very clear strategy of where each party plays in a global effort to, as you say, put MS behind us.
Thank you very much, Associate Professor Des Graham. Thank you too for joining us and for a superb and really important report, Professor Palmer and also Professor Taylor. Thank you so much for joining us on The Raw Nerve.
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