A (4:32)

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

B (4:37)

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 (7:15)

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 (7:26)

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 (9:03)

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.

B (10:12)

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 (10:41)

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

B (10:48)

It's a difficult question.

B (10:51)

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 (11:25)

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 (12:37)

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 (13:14)

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.

B (13:39)

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

A (13:47)

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

C (13:50)

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 (14:14)

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.