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RealTalk MS
Episode 465: On Being an MS Specialist In A Country That Believed MS Was Non-Existent with Dr. Avinash Chandra
00:37:16
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- [00:01]
A
I'm john strum and this is real talk, mississippi. It's July 28th and we have a lot to talk about. I consider research to be the engine that drives the future. And when I think about how far we've come in just the past few years, I can't help but feel optimistic about the prognosis for someone living with Ms. Today. But things could be very different. Imagine for a moment that whatever country you happen to be living in determined that Ms. Didn't really exist there. That means there's no Ms. Care, no Ms. Society, no Ms. Research. My guest this week is Dr. Avinash Chandra. During his fellowship at the University of Buffalo, Dr. Chandra trained at a world class Ms. Center to become an Ms. Specialist. Then he returned home to Nepal and discovered that Ms. Was considered non existent. But Dr. Chandra knew it wasn't. So he began creating a framework for Ms. Care that hadn't existed before. He went to medical schools to educate doctors. He co founded the Ms. Society of Nepal. And if you look up what it means to be a difference maker, I think you're going to find Dr. Chandra featured prominently in that description. But before we get to my conversation with Dr. Avinash Chandra, there are a few other things that you should know about. Women make up about 70% of the Ms. Population, but it's been well established that when men are diagnosed with ms, they tend to experience faster and more severe disease progression than women. Now why this happens isn't clear. Experts believe that hormones, the immune system itself, along with lifestyle and environmental factors, all contribute to this difference in disease. Course research, most notably research from Dr. Helen Tremlett's lab at the University of British Columbia shows that people with Ms. Have a higher use of health care in the years before they experience their first Ms. Symptom. This phase of non specific signs and symptoms before the onset of a disease is called the prodromal phase and researchers are interested in understanding the Ms. Prodrome because it may point to how Ms. Actually begins. A new study from Dr. Tremlitz Lab analyzed healthcare use in Ontario, Canada between 1991 and 2020. The researchers were able to identify 35,018 people with Ms. And as you would expect, 69% of them were women. Each of these individuals was statistically matched with five people who didn't have Ms. They were matched by sex, birth year, the area they lived in, when they experienced their first Ms. Symptoms, and the length of time they lived in Ontario. So the research team grouped these 35,018 people with Ms. By sex and compared how and how often they accessed health care compared with 136,007 people without Ms. And the researchers discovered clear differences in health care use by sex up to a decade before the onset of Ms. The research team discovered that compared to those people of the same sex without Ms. Beginning 10 years before Ms. Onset, males had consistently higher rates of nervous system related visits to the doctor than females. These rates peaked in the year before the onset of Ms. At 28.6 times higher for males and 13.6 times higher for females. Beginning 4 years before Ms. Onset, males had consistently higher rates of mental health visits to the doctor than did females, peaking in the year before Ms. Onset at 3 times higher for males and 2.1 times higher for females. Beginning 3 years before Ms. Onset, males had higher rates of ill defined signs or symptoms and injury related visits to the doctor than did females. Males also had higher rates of respiratory related, genital and urinary related visits than females beginning two years before Ms. Onset. And in the year before Ms. Onset, males had higher rates of health care usage for muscle and skeleton related, digestive and infection related visits to the doctor than did females. In all cases where sex differences were found, males who eventually developed Ms. Had consistently higher doctor visit rates than females who eventually developed Ms. It's one more piece of evidence that demonstrates men with Ms. Have a more severe disease course that actually begins up to a decade before they develop the first typical Ms. Symptom, which is also a significant clue that males and females living with Ms. Have probably carried the disease from for many years before they experience that first Ms. Symptom. Now, if you'd like to review the details of this study, you'll find a link in today's Show Notes. And if you'd like to review my friend Sharon Roman's excellent plain English summary of this research, you'll also find that link in today's show notes. Finally, if you'd like to listen to Dr. Helen Tremlett explain her work exploring this prodromal phase of MS, you'll find that conversation in episode 321 of RealTalk Ms. And you'll find that link in today's show notes as well. Today's high efficacy disease modifying therapies have been shown to do a great job at delaying progression and allowing people with relapsing remitting Ms. To truly live their best lives. Unfortunately, not everyone with relapsing remitting Ms. Responds to these high efficacy DMTs. So if you're someone living with a relapsing form of Ms. What do you do when the high efficacy disease modifying therapies stop working for you? Well, in a 2025 consensus statement, the European Committee for Treatment and Research in Ms. And the European Society for Blood and Marrow Transplantation recommended autologous hematopoietic stem cell transplantation, or ahsct, as an escalation option for highly active relapsing Ms. After the failure of at least one high efficacy DMT and before irreversible damage develops. A research team at the University of California, Irvine, reviewed more than 30 years of data related to treating Ms. With autologous hematopoietic stem cell transplantation and discovered that AHSCT produced higher rates of what's referred to as no evidence of disease activity, which means no relapses and no new lesions. In fact, AHSCT produced lower annualized relapse rates and sustained functional gains compared with disease modifying therapies in individuals. One of the studies reviewed was a randomized phase 3 trial that enrolled 110 participants with highly active relapsing remitting Ms. The study participants were evenly split into two groups. One group received AHSCT and the other group received disease modifying therapy. The outcome of this clinical trial really speaks for itself. Disease progression occurred in 6% of the transplant recipients compared with 67% of those on DMTs. And after five years, 85% of the transplant recipients remained relapse free compared with just 3% of those on DMTs. Transplant recipients also experienced improvement in their walking speed and arm function while accumulating fewer new lesions on mri. While AHSCT is still considered experimental in the United States, European guidelines recommend AHSCT for for people with Ms. Who are under 45 years old with an expanded Disability status Scale or EDSS score of 5.5 or lower, and high clinical and MRI activity. Despite using DMTs, results from studies that focused on progressive Ms. Have not been as positive and there are multiple factors to consider in determining whether someone is a viable candidate for ahsct. Meanwhile, if you'd like to review this analysis, you'll find that link in today's show. Notes. On this podcast, we often talk about the more than 20 different disease modifying therapies that are available today. Well, research that's been funded by the National Ms. Society has contributed to the development of every one of those FDA approved Ms. Therapies. Today, more than half of the Society funded research projects are focused on stopping Ms. In its tracks. That means no new symptoms, no new damage, no more living with the uncertainty of what tomorrow might bring. There are more than 30 research projects being funded by the Society that are advancing biomarker research that could detect Ms. Earlier and early intervention directly translates to a better outcome for the patient. More than 50 society funded research projects are working toward restoring myelin that's been damaged by ms, and that means regaining the function that Ms. Has taken away. The pace of scientific discovery has never moved as fast as it's moving today, and with 80 years of progress and over a billion dollars of research investment behind us, we're at a pivotal moment. It's a moment for you to step up and support Ms. Research by supporting the National Ms. Society. Your donation will help power over $100 million in active research, accelerating the work that brings us closer to ending Ms. We're in the final few days of the Ms. Society's research fundraising campaign. That means when you make your donation by July 31st or 100% of your gift will go to Ms. Research, every donation in any amount counts. So if you're able, please visit nationalmssociety.org research and make a donation in whatever amount works for you. You'll find that link in today's show Notes While we're talking about research, I'll also mention that we're less than 90 days away from the Joint meeting of the European Committee for Treatment and Research in Ms. And the Americas for Treatment and Research in ms, better known as the Joint Ektrams and Actrams meeting. This is the largest Ms. Research conference in the world and it takes place October 21st, 22nd and 23rd in Toronto, Canada. I want to remind you that on October 23rd from 3 to 6pm Eastern Time, you can participate in the 2026 ectrims patient community Day. This is a live in person and online event where you'll see some of the top Ms. Experts in the world explaining the research that was presented at this joint Ektrooms Actrooms meeting in easy to understand language. You'll even be able to submit your own questions and have them answered by some of the best and brightest Ms. Researchers in the world. I hope you'll take a moment to visit ektromspatientcommunity Euro and register for what I know is going to be an amazing program and you'll find that link in today's show Notes from discussing the very latest cutting edge Ms. Research and treatment. We're going to switch gears in a big way and talk with Dr. Avinash Chandra about his return to Nepal following the completion of his fellowship in the United States. Dr. Chandra returned to Nepal to discover that Ms. Was considered virtually non existent. So there was no Ms. Care, no Ms. Research, no Ms. Society. And we'll learn firsthand what he decided to do about that. In a moment we'll meet my guest, Dr. Avinash Chandra. What happens when you train at a world class Ms. Center in the us, return home to practice and discover the disease you specialize in is officially considered rare to non existent in your country. My guest today is Dr. Avinash Chandra, a neuroimmunologist and the co founder of the Multiple Sclerosis Society of Nepal, who's on a mission to build a diagnostic and care network from the ground up. Welcome to the podcast, Dr. Chandra. It's an honor to have you here.
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Thanks, thanks so much. Thanks for having me. I'm really excited and delighted to be here and talking to you. It feels like I'm back in US again. When I was doing fellowship there and it's been quite a long time, I'm back to Nepal and talking to you feels like I'm again in US So thanks, thanks for having me.
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A
Well, as, as we're saying, you did your neuroimmunology and Ms. Fellowship training in New York at Buffalo General Hospital where you saw patients pretty much every day. As I just mentioned, when you returned to Nepal, the landscape was completely different and Ms. Was widely considered a rare or virtually non existent condition. What was that initial culture shock like for you as a clinician? And how did you begin to bridge that gap?
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B
Right, true. I mean it's back 10 years, almost a decade back when I was in US before that even while in medical school. And to tell you the surprise that still in medical books multiple sclerosis is written as not so common disease for Nepal and these kind of allies countries like the countries which are near equator. So it's not so commonly found. It's still written in medical book and back 10 years back when we were studying in our medical school, it was just like that that even we were taught that multiple sclerosis is more for western populations, the countries which are in the polar region. So that was pretty much taught and that was cemented in our mind. So when I was in, before going to US I was in Singapore and for for a while. So in Singapore also multiple sclerosis was not so much of heard of. Not that it was very rare, but it was not very heard of. So when I went to US and I saw the, the problem there, it was like there were lots is going on as it's going on right now. But back then there were lots of trials and lots of pathophysiology to be understood for multiple sclerosis going on. So they were like, oh, we have vitamin D deficiency and we have this and this deficiency. That's why we have more Ms. In, in, in this region. And because you guys live near equator, you get more sunlight, you have more vitamin D, you have less Ms. So that's what was the scenario. But when I came back, when I started working as a, as a neurologist and especially in Ms. Specialist, it was completely different scenario. And then I wrote one paper, I did one research, a small research in hospital, and I tried to question the, this dictum that are we really vitamin D deficient? I mean, if we are vitamin D deficient, is that really the reason that we have ms? Because Ms. Was not that less as it was expected. So that was my surprise. And just to tell you one scenario like, I'm not just practicing multiple sclerosis in Nepal. I have to practice the whole neurology because we are only 40, 45 neurologists all over Nepal of 30 million people. So we do not have that liberty like my, my professors or my, my seniors, my mentors had in us that they would just practice multiple sclerosis. I'm not given that liberty.
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A
I understand diagnosing Ms. In the west relies on the McDonald criteria, early MRI tracking lumbar punctures. In Nepal, where health insurance coverage is minimal and the vast majority of healthcare costs are paid out of pocket, what does a diagnostic journey look like for a patient?
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B
Yes, that's true. I mean, all those guidelines that tell us how to diagnose or how to treat multiple sclerosis cannot be implemented all 100% in Nepal. And that's what makes this disease as an expensive disease. So it's still regarded as the. Multiple sclerosis is regarded as disease for the richer people because you have to get one MRI. The MRI would cost almost like, let's say $150. And for a family, the whole, the income for a month would be like 150 to $200, $300, like for the average family. So it's not that easy to just get an mri, which is one of the essential part to cms, and forget about the lumbar puncture or the other tests, because all of them add up the investigation prices. But given that, I mean, we still have the same diagnostic criteria and we still do multiple mri, we do lumbar punctures, we send oligoclonal Bands and all those things that are required for MS, we do the OCTs for eyes to recognize Ms. So we do all those kind of things. But yes, just like when there is the, when you have less abundance, you have less resources, you try to innovate more to make it adapted like you can. The things that we have, we do not have that liberty to have all those tests at a time. So what we have, like I have innovated a few of the things that make us easier and cheaper for diagnosing Ms. Like for mri, we have certain some sequences in the mri, like the MRI that we should do, we do not do in the same way. We just pick up the highly sensitive sequences in MRI that would catch multiple sclerosis. So we just do that one and that brings down the cost to almost like 50% lesser than it should be. So we do like that we like for oligoclonal bands and all those we try to prefer just giving you some examples, like we try to prefer the oct, the opticoherence tomography for eyes rather than just relying on oligoclonal bands. Because for the lab part we do not have everything available in Nepal. So we have to again outsource. So we have to send it to India and then get back the result from India and that that cost the time and as well as the price. So we have innovated few of the things to diagnose Ms. And that's how we have been working on.
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A
I know that you're known for creating, I think what you call local adaptations when it comes to diagnosing Ms. Let's talk about treatment for a second. When high efficacy disease modifying therapies are financially out of reach for a family, how do you approach treatment? What does that adaptive neuropharmacology look like in this context?
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B
Yes, it's a very relevant thing because not just the diagnosing Ms. Is expensive, the treating is more expensive. Just to give you an example, recently found medicine like ocrelizumab, the one medicine that has been used so frequently for multiple sclerosis costs Almost, almost like $800 for bringing it in Nepal just one shot. So one shot would cost $800, which is just unimaginable for an average family.
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A
And, and what would that average income look like for that family?
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B
So the average income, like I'm just talking about just the decent family, the middle class family. So the middle have like let's say $500 to $600 per month.
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A
Per month.
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That's what income. Yeah, per month for, for a Family of like four people. At least of four people. And we the. The socioeconomic scenario in Nepal is that we usually have the joint families like we live with our parents and the children. Everyone lives in the same roof. So minimum of the four to six families members are in one family. And average family would earn around 500 to $600, not more than that. And just imagine that someone if gets Ms. Just to diagnose one MRI would cost around hundred dollars, 150 dollars. And one lab test would like for lumber puncture or some kind of investigations would cost another, let's say like 70, $80. So altogether the diagnosing becomes so, so highly expensive and especially when you are paying out of your pocket, you have to, you have to go for a month, run the family for a month and then get your investigations. So that really becomes very hard to do and especially that becomes harder for the doctors too to convince them that you have to get this investigation done or you have to get this treatment done. Because we are trying to save the people, we are trying to halt the disease, but we are also seeing the family who are dependent on them for the money. So that becomes very problematic all the time for us and especially similarly for the treatment. So unfortunately we have to still rely heavily on all the. The previous. We. We call it trivial medicines like the medicines that were used almost like 50, 30, 40 years back in US. Like we call it Azathoprene. This kind of medicines that, that used to be the, the very previous primitive kind of medicines. We still rely more on them because not everyone would afford to have the, the shot like the beta interferon sort like we say the popularly known Avonax. So one Avonax salt would cost almost like 100 to $110 which per week which is because that that shot needs every week shot. So every week hundred dollars is just out of question for many families. Only few people who can afford.
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A
I understand when I introduced you I mentioned that you were the co founder of the Ms. Society in Nepal. How did that come about?
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Yes, I mean with all these like when I, when I went to US for multiple sclerosis fellowship back when I came back, I mean I used to talk with friends from, from country and they used to tell, tell me that why did you do the fellowship in. In. In a disease which is rare like you will seldom get the patients. And I, I used to think that it's not, it shouldn't be rare that as rare as it is because the pathophysiology that is behind that what we know is something that is not just related with the environment or that is not just only related with the places we live in. That's something very different because our immune system is deranged. And that's what brings Ms. To, to just make it simple. And immune system is such a complex thing that you cannot just have one factor that, that would just create. So not all these things are not just the, the one one reason to have Ms. And that's what happened when I came back, when I started seeing the patients. And that's the scenario that you can imagine that such an expensive investigation, such an expensive treatment and such a less aware people and the doctors because multiple sclerosis itself has such a diversified symptoms. Like someone just with the tingling numbness would be diagnosed as Ms. Someone with just a visual problem would be diagnosed as Ms. Someone just having fatigue would also be diagnosed as Ms. It's such a varied kind of symptoms that the disease itself used to be called as rare. And that's how people were not much paying attention to this disease and symptom itself is so confusing that the doctors would just simply skip with the symptoms. They would not even think for Ms. Because for them Ms. Would just be the visual problem back then. And then I started realizing that it's not just the problem for not getting Ms. Is because we are most likely we are just having the under diagnosis of the this disease or we can. We are having misdiagnosis. And that's where I started thinking that no, we have to create the awareness more first. Let's work on the awareness. And that's what I started on my own. I started having some free camp, the health camp. I started having going to medical schools, teaching the, the medical students as well as the. The doctors, my colleagues through my colleagues. I started just having the network. I saw that just in like few months of time people that the doctors, the student were interested, getting interested in Ms. And I started getting more referrals for, for the patients. And then I thought that no, now is the time when I we, we need to create one society. Because I, when I was in US I was, I was pretty much closer seeing msif the International Federation for Ms. And Flow General. Then the New York itself was a big hub for multiple scale versus consortium. They had like a lots of bigger database. So that's what I had learned there. And I started thinking that no, we have to create some, some place where we, we can collect and we can have at least a simple data database for, for multiple sclerosis. And that's what started coming idea and then I with my few colleagues I started thinking that no we have to create one society where and our society should be different because most of the society where the doctors create the society that is mostly for the doctors only. So I I thought it in in different way that this society should be a place where the doctors meet with the the patients so the caregivers and the caretakers, all of them should be on the same platform and where we can share not just the research because research should be open to everyone. Whoever knows something about the research should have the access. That's what I believe. So this society came into light.
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A
Without a centralized national registry or database. Tracking the true burden of Ms. Can become very difficult. How is the Ms. Society Nepal working to capture data and build a truer picture of Ms. In Nepal?
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B
Yes, this that's really true thing that if we do not have the central data it's very difficult to collect the data. And that's what we are facing the problem right now. We do not have an exact data that okay this much of the patient we have but what we are trying to do is like through the networking and the awareness we are trying to capture each hospitals where they would not hesitate to share the data whatever the data they have and then we can pull up those old data to one society. The multiple scholarship society would have that old data and we can look up into. So this year we, we created a lot of this kind of networking. We had held lots of meetings with lots of people and we came to know that we have at least 350 patients we who are taking the medicines those all expensive medicine that we think of. So there are more than 350 people who are taking some kind of shots or some kind of oral medicines. All of them expensive, not just those all old previous medicines. So that's how like I'm. I'm having. But yes, as you rightfully said that if we do not have the centralized data, we do not have that pretty much reliable data. But this is all the data that is coming from all the hospitals and we have pulled up and we have seen that almost like 4 to 500 patients are there having the treatment and the people who have lost to follow up or who are not having treatment are more than what we are thinking.
- [32:56]
A
We have many listeners in the international Ms. Community from researchers in the US to advocates in Europe and of course patients and caregivers everywhere. What's the most critical thing people need to understand about the realities of chronic neurological care in resource constrained settings.
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B
Yes. I mean I must thank you for giving me this opportunity to speak up here and I really hope that the people out there listening to this podcast, I would, I would really appreciate everyone and request everyone that to stand in the shoes of of all those resource limited setting and see how difficult it is not just for the patients that who gets the disease and who has to fight this disease with along with the treatment but for even the caregivers who has to create some way where he has to treat the patient and get the diagnosis right. So yes, it's very difficult for working in the resource limited setting. But yes, if there are any opportunities, I mean that's what I really would like to see that all the developed places where they are working very well with multiple sclerosis they should join in hands with us and help us. Not just Nepal, all the least developing places where multiple sclerosis is such a big problem for all those resource limited settings. So I mean all the places who are more developed should join enhance with all these kind of resource limited setting and should create some ways where every one of us would come to the same pace.
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A
Dr. Avinash Chandra, I want to thank you for your remarkable efforts to diagnose and treat people living with Ms. In a country that didn't know it even existed. Thanks so much for talking with me today.
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B
Thank you. Thank you so much for having me. And I really thank every listeners that yes, this Ms. We will be fighting. We all together are on the same year. It doesn't make difference being a doctor or being a patient, but we all are fighting this disease so we will fight to win. Thank you.
- [35:34]
A
That's going to wrap up this episode of Real Talk Ms. Real Talk Ms. Is powered by the National Ms. Society and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com 465. You'll find that link in today's show notes so you can easily copy and paste it right into an email or a text. The subject more of you ask about than almost anything else is diet and Ms. And next week, Dr. Tyler Titcomb joins me for a deep dive into understanding the impact of diet on Ms. Dr. Titcomb is a registered dietitian in the Department of Neurology at the University of Kansas Medical center, where in addition to seeing patients, he's working hard to spread the word that dietitians need to be a part of every Ms. Care team. I hope you're planning to join me next week when I'm devoting the entire episode to my conversation with Dr. Titcomb. I'm John Strum. Thanks for listening. Stay safe and make healthy choices,
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B
Sam.