Special Episode: Guiding the Future of MS Care: MS21 Consensus Recommendations for Improving MS Care to Relieve the Burden of Disease

Summary

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RealTalk MS - Special Episode: Guiding the Future of MS Care

Episode Theme:
Jon Strum hosts a discussion on the new MS21 consensus recommendations—an international effort to redefine and improve standards of multiple sclerosis (MS) care to alleviate disease burden and enhance patient quality of life. His guests are Amanda Montague (MSAA Interim President and CEO) and Professor Elizabeth G. Celius (Oslo University Hospital neurologist), both active in the MS21 Initiative that unites professionals, advocates, and people with MS worldwide.

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Main Episode Sections

1. Background: What are the MS21 Consensus Recommendations?

[00:00–04:37]

• Intro to Guests and Initiative
  • Amanda Montague leads a national MS resource nonprofit (MSAA).
  • Prof. Elizabeth G. Celius is a consultant neurologist and MS researcher.
  • Both participate in the MS21 Initiative (“MS in the 21st Century”), a collaboration among professionals, patients, and advocates internationally.
• History and Purpose
  • MS21 originated in 2011, published a first consensus in 2013 defining MS care for the 21st century.
  • The new update expands beyond treatment, emphasizing comprehensive care—including symptom management.

    “The initial thought was: what do we think is a minimum standard [of MS care] across the world? ...With 10 years’ experience, we wanted to expand… including burden of symptoms and their care, not only the treatment.”
    — Prof. Celius [01:48]

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2. Patient and Advocate Perspectives

[03:10–04:32]

• Diagnostic and Access Gaps
  • Delayed diagnoses and obstacles accessing MRIs and proper treatment persist globally (“A real problem,” Amanda Montague [03:27]).
• Therapy Evolution
  • Patients face a “wonderful explosion” of disease-modifying therapies, requiring complex, collaborative decision-making.
  • This increase in therapeutic options also creates more conversations but can introduce new disparities and access issues.
• Informed Advocacy
  • Patient and advocate input has guided consensus development to better reflect lived experiences and practical needs.

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3. Key Features of the New Recommendations

[04:32–07:15]

• Inclusive Consensus Process
  • 30+ members: healthcare professionals, patients, and advocates participating on equal terms.

    “What makes [MS21] unique—that we work together... The steering group decides what kind of questions do we want an answer [to]... We are equally important in this group.”
    — Prof. Celius [04:37]

• Holistic, Multifunctional Care
  • Emphasis on not only treating the disease but also managing invisible symptoms:
    • Fatigue, cognitive dysfunction, bowel and bladder symptoms.
  • Shared decision-making and patient education are core pillars.
  • Continued research and development needed—not just for new drugs, but for symptom relief and quality of life.

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4. Real-World Application and Hopes for Change

[07:15–12:37]

• Holistic Aspirations Scaled Globally

  • Recommendations are both realistic and aspirational—intended as a “roadmap” towards better MS care everywhere, despite differences in resources.

    “They are beautifully aspirational and something that we can all work on... regardless of where they live or how wealthy they are.”
    — Amanda Montague [07:26]

• Empowering Patients

  • Tools to “raise awareness and… help patients to have more guts to ask for help.” (Prof. Celius [09:03])
  • The process revealed strong patient-provider agreement on MS care priorities.

• Implementation Barriers & Opportunities

  • Recognizes limitations: Most collaborators are from better-resourced countries, yet “it is the same problems all over.” (Prof. Celius [10:12])
  • Raising awareness among both professionals and patients is the first step, plus leveraging the published consensus globally.

• Advocacy and Local Solutions

  • Many recommendations may “seem so, so out of reach,” especially in under-resourced regions—yet this is framed as a call to action and an opportunity for “working smarter together.” (Amanda Montague [11:25])

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5. Closing Reflections and Next Steps

[12:37–14:14]

• Summary of Core Themes

  • Optimizing care, strengthening shared decision-making and education, and fostering ongoing research are at the heart of the recommendations.

• Continued Collaboration and Global Learning

  “We can work together both for the holistic care and for the research into all these unmet needs… [and] join forces to improve care for this group.”
  — Prof. Celius [13:14]

  • Emphasizes sharing best practices internationally:

    “Some of these things are already happening and being done well, so we don’t have to reinvent the wheel. We can learn from each other...”
    — Amanda Montague [13:50]

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Notable Quotes & Timestamp Highlights

• On the need for comprehensive, holistic care:

  "We need care for invisible symptoms like fatigue, cognitive problems, bowel and bladder symptoms... to ensure as good quality of life as possible."
  — Prof. Celius [06:48]

• On empowerment and global impact:

  "If we can, with these guidelines, tell the communities that this is what we really want… patients and healthcare professionals together, we agree."
  — Prof. Celius [09:03]

• On advocacy and setting ambitious targets:

  “I look at that as a potential opportunity for... advocacy... How do we identify solutions to places where... these things seem so, so out of reach? ...This is, I think, the beauty of... this group coming together with so much heart and compassion and belief and optimism.”
  — Amanda Montague [11:25]

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Key Takeaways

• The updated MS21 consensus recommendations call for a truly patient-centered, holistic approach to MS care, balancing the latest medical science with quality-of-life issues and symptom management.
• Shared decision-making, raising awareness of unmet needs, and global collaboration are highlighted as essential strategies.
• The document aims to be both a practical guide and an aspirational vision, adaptable across diverse health systems and resource environments.
• The conversation underscores the value of uniting patients, advocates, and professionals as equal partners in redefining what comprehensive MS care should look like in the 21st century.

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For further reading and free tools:
Visit msinthe21stcentury.com for the full MS21 recommendations and additional resources.

Transcript

[A]

Welcome to a special episode of Real Talk Ms. This episode is sponsored by EMD Sirono, the healthcare business of Merck KGaA, Darmstadt, Germany in the US and Canada. Please note that this discussion is only intended for a US audience. Joining me today is Amanda Montague, an Ms. Advocate working as Interim President and CEO of the Multiple Sclerosis association of America. MSAA is dedicated to the mission of being a leading resource for the entire Ms. Community, improving lives through vital resources and support. I'm also joined by Professor Elizabeth G. Cilius, a consultant neurologist with a special focus on Ms. At Oslo University Hospital in Norway, where she's group leader of the Ms. Research Group and also carries out research in epidemiology, genetic and clinical studies. Both Amanda and Elizabeth are active members of the Ms. In the 21st Century Initiative, better known as MS.21. MS.21 is a Merck KGaA, Darmstadt, Germany Initiative involving healthcare professionals, people with Ms. And patient advocate groups. Please note that the discussions in this podcast are not intended to be interpreted as medical advice. Be sure to ask your physician for more information about your specific circumstances. Today we're going to be exploring MS.21's new consensus recommendations for the future of Ms. Care to understand what experts and people in the Ms. Community think are the priorities to focus on in order to improve care and help relieve the burden of Ms. That people experience. Elizabeth, I hope you'll start us off by explaining what these recommendations are and how they were developed.

[B]

The MS.21 initiative was initiated in 2011 and in 2013 we published a consensus statement about how to treat Ms. Or the care for people with Ms. And time has gone by and the decision was to initiate a new version of these consensus guidelines, also including more comprehensive care. So the meaning of originally was how will Ms. Care look in the 21st century? What do we think is a minimum standard across the world and how shall we kind of align the standards across the world and across different treatment paradigms? So that was the initial thought and with 10 years of experience with this, we wanted to expand it and include information about the more comprehensive care, including burden of symptoms and their care. Not only the treatment, but also the burden of symptoms and the care. So that was the plan.

[A]

Amanda, can you tell us a bit about what you've heard from people with Ms. About their experiences receiving care, how this has changed over the last 10 years and how this input informed your perspective in helping to develop the updated recommendations?

[C]

Sure, and thanks for having us on. John. I think the biggest thing that we hear is people's challenge in getting a diagnosis still remains a real problem and then access to appropriate care. So we have a lot of folks who I think sadly are unable to access the resources that allow them to get the diagnosis in a timely fashion, such as MRI or are being under treated or untreated. And these issues really do impact the long term patient outcomes for folks. And so it's something I know all of us in the advocacy community have been working really hard to try to change. I think another challenge perhaps in the past 10 years has just been the wonderful explosion of disease modifying therapies available to people living with ms, which has, you know, necessitated a lot of involved conversations between people living with ms, their care partners and their healthcare professionals. And that's another piece that I think that we all try to work together to help inform folks in that process of deciding which therapy is best for them to be on.

[A]

Elizabeth, can you tell us more about the specific recommendations themselves?

[B]

Yeah, it's developed with a so called therapy process, consensus process, so that this is a group of healthcare professional patients and patients advocate groups. And that is what I think make it unique that we work together with this and the steering group decides what kind of questions do we want an answer. And you make rounds of voting to achieve consensus among all these. And we are equally important in this group and in this development of these guidelines. So in this specific guidelines or consensus recommendation there were around 30 people involved. And as Amanda said, there are a wonderful explosion of new therapies for Ms. And the Ms. Disease course. But it has not been the same explosion in treatment of symptoms. And much focus has been on early diagnosis, starting treatment, and one may perhaps say that partly treating symptoms has been forgotten or downplayed at the same time. So we thought that it's important to stress the holistic view, trying to take care of the whole Ms. Patient with all the symptoms and to stress the shared decision making, patient education and healthcare education, I think, because that's also needed and then also to work for more research and development, not only in the treatments of the disease cause, but in the whole field of Ms. So we have achieved, I think in many places at least, access to quick and treatment after diagnosis. But we need multifunctional care, we need rehabilitation, we need care for invisible symptoms like fatigue, like cognitive problems like bowel bladder symptoms. That needs to be included to have or to ensure as good quality of life as possible.

[A]

I'd like to ask both of you how you think these recommendations could change the daily lives of people living with Ms. And their Care partners. Amanda, why don't you start?

[C]

Sure. I think Elizabeth described the process beautifully and it was a really wonderfully deliberative process with a lot of diverse stakeholders from all over. And so one of the things I was really moved by was the focus on the holistic approach to treating Ms. And quality of life issues. And so I think many of the recommendations we came up with, even if they aren't tangible to people living in certain areas of the world or certain areas of the country, I think they are beautifully aspirational and something that we can all work on trying to make a reality for folks, regardless of where they live or, you know, how wealthy they are or the resources they might have. And so I think that that's where I see these as being most useful as a roadmap for all of us to work towards making sure that the people living with Ms. In our communities are able to actually not just see the recommendations, but actually live and experience them. The symptom piece, I think, is a big one. I think that there's a lot of hopefulness on my part at least that the recommendations could be used as a real starting point for people living with Ms. And care partners and their healthcare professionals to do some shared decision making around areas that they might not even be aware of, that there might be treatments or some solutions to issues that they're having. So I think that it hopefully will provide a perspective for people to look at and engage in meaningful conversation about how to actually improve their care. Elizabeth, what do you think in terms of what people might actually get out of the recommendations?

[B]

I think it raises awareness and it helps patients to kind of have more, more guts to ask for help because many do not know what to ask for and then they don't ask. So if we can, with these guidelines, tell the communities that this is what we really want, we would like to give you that. And yeah, the way we have made these patients and healthcare professionals together, we agree. And that's also, I think, the wonderful part about this. We really agreed on this. The top priorities was the same for the patients, for the people with Ms. And the healthcare professionals. So we were not standing on each our own planets. We were together on this. And that could help people to bring this to their doctors and saying, see, this is what is wanted, what we would like to. And you pointed to this all over the world.

I see that it can be a problem in many countries, but we do have to want to bring this to everyone across the world. It's a limitation that most of us involved in this recommendations are from the we are better off the countries that are involved, but it is the same problems all over. So we have to work for that, to spread it.

[A]

Elizabeth, what do you see as the necessary steps to implement these recommendations effectively?

[B]

It's a difficult question.

But I think the raised awareness both among healthcare professionals and patients or persons with Ms. About the unmet needs, making it visible, telling them that this is a big unmet need and we have to address it is the most important. And then I think this publication can help us because we can bring this around and show it and talk about it and spread the word.

[C]

I think the other piece that we mentioned around shared decision making is very important and going back to this idea that we understand and intentionally included things that seemed maybe slightly out of reach for some of the countries even we live in or some places and countries that we live in. But I think it's really important and I actually think it's very exciting to think about reaching to make sure that access is available in places. And I am quite sure we will all hear from people living with Ms. Who say these recommendations are lovely, but there's no way right 11, 15, 16 and 17 could ever happen where I live. And I look at that as a potential opportunity for us in the advocacy world, for healthcare professionals, for people living with Ms. And care partners to go, okay, well how do we change that then for you? How do we identify solutions to places where there really does feel like these things seem so, so out of reach? Well, there's solutions to that and this is, I think, the beauty of, of, of this group coming together with, with so much heart and compassion and belief and optimism that we can actually change outcomes for people living with Ms. By working smarter together.

[A]

Well, we've really covered a lot of ground taking a deep dive into understanding MS.21's new consensus recommend of Ms. Care. We talked about some important core themes like optimizing current Ms. Care provision, facilitating shared decision making and patient education and continuing research and development. And we talked about how these consensus recommendations could improve treatment and change the day to day lives of people living with Ms. And their care partners. So I'd like to ask my guests if they have any final thoughts they'd like to share.

[B]

Elizabeth I think I do hope that we can continue to work together in such groups with both persons with Ms. And healthcare professionals and their advocacy groups. We can work together both for the holistic care and for the research into all these unmet needs.

So we try to join forces to improve care for this group.

[A]

Amanda, how about you? Any final thoughts to share?

[C]

Yeah, I completely agree with Elizabeth. I think the one piece I will add is that I think it'll be great too with the network we've created in terms of the collaboration of folks all over the globe to find out where. Some of these things are also already happening and they're being done well so we don't have to reinvent the wheel, right? We can learn from each other too and all make this a reality for folks living with Ms.

[A]

I want to remind everyone that you can find the new recommendations for the future of Ms. Care on the ms.21 website. That's msandhe2stcentury.com, where you'll also find free tools and other resources that can help people with Ms. Better navigate their Ms. Journey, prepare for upcoming appointments with their neurologist or Ms. Specialist, and plan their care. That website again is msinthe2stcentury.com and you'll find that link in today's episode's show. Notes I Want to thank EMD Sirono once again for sponsoring this special episode. EMD Serono is the healthcare business of Merck KGaA, Darmstadt, Germany. In the US and Canada.