RealTalk MS
RealTalk MS
Navigating multiple sclerosis is easier when you understand the science behind it. Join host Jon Strum each week as he translates complex MS research, treatment breakthroughs, and healthcare news into clear, accessible language. Whether you’re living with MS, caring for a loved one, or looking for answers, RealTalk MS connects you with top neuroscientists, advocates, and the information and insights that matter most to your MS journey.
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July 27, 2026

Episode 465: On Being an MS Specialist In A Country That Believed MS Was Non-Existent with Dr. Avinash Chandra

Episode 465: On Being an MS Specialist In A Country That Believed MS Was Non-Existent with Dr. Avinash Chandra
RealTalk MS
Episode 465: On Being an MS Specialist In A Country That Believed MS Was Non-Existent with Dr. Avinash Chandra

Key Takeaways

  • Dr. Avinash Chandra returned to Nepal after completing his fellowship in the U.S. and discovered that multiple sclerosis was widely considered virtually non-existent.
  • Establishing MS care in Nepal required overcoming significant hurdles, including high out-of-pocket costs for MRIs and treatments in a country where the average family income is $500 to $600 a month.
  • Dr. Chandra innovated local adaptations for diagnosing MS, such as using shortened, highly sensitive MRI sequences and optical coherence tomography (OCT) to lower diagnostic costs.
  • Due to financial limitations, clinicians in Nepal often have to rely on older, more affordable immunomodulatory treatments rather than high-efficacy disease-modifying therapies.
  • A recent study from Dr. Helen Tremlett's lab analyzed sex differences in healthcare usage and found that males with MS had consistently higher doctor visit rates up to a decade before the onset of symptoms.
  • European guidelines and a 30-year review of autologous hematopoietic stem cell transplantation (aHSCT) demonstrate significant benefits for relapsing MS when used before irreversible damage occurs.

During his fellowship in the United States, Dr. Avinash Chandra trained to become an MS specialist at a world-class MS center. Then he returned home to Nepal and discovered that MS was largely considered non-existent. But Dr. Chandra knew it wasn't.

In this week's episode, Dr. Chandra discusses his experience creating a framework for MS care in Nepal that hadn't existed before. He also explains the necessary trade-offs in providing costly medical treatment in a country where the average family of four lives on an income of $500 a month.

Dr. Avinash Chandra

It's been well-established that males living with MS tend to experience faster and more severe disease progression than females. We're sharing results of a study that shows clear differences in healthcare use by sex up to a decade before the onset of MS.

We'll tell you about a newly published review of 30 years of data measuring the efficacy of autologous hematopoietic stem cell transplantation (aHSCT).

And we're sharing the registration details for ECTRIMS Community Patient Day (it's a free live and online event you won't want to miss!)

We have a lot to talk about! Are you ready for RealTalk MS??!


This Week: MS care in a country that considered MS non-existent :22

A study analyzed sex differences in healthcare usage between males and females with MS up to a decade before the first MS symptom develops 1:45

30 years of accumulated data show significant benefits of autologous hematopoietic stem cell transplantation in treating relapsing forms of MS 6:17

It's time to support the National MS Society's $119.6 million active investment in MS research 9:32

Dr. Avniash Chandra discusses MS care in Nepal 12:43

Share this episode 35:40

Next week 36:01


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LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com

STUDY: Sex Differences in Healthcare Use Before the First Multiple Sclerosis-Related Demyelinating Event
https://www.msard-journal.com/article/S2211-0348(26)00396-2/fulltext

PLAIN ENGLISH SUMMARY: Sex Differences in Healthcare Use Before the First Multiple Sclerosis-Related Demyelinating Event
https://tremlettsmsresearchexplained.wordpress.com/2026/07/22/sex-differences-in-healthcare-use-before-the-first-multiple-sclerosis-related-demyelinating-event-explained

LISTEN: Dr. Helen Tremlett Discusses the MS Prodrome
https://realtalkms.com/321

STUDY: Autologous Stem Cell Transplantation for Multiple Sclerosis
https://pubmed.ncbi.nlm.nih.gov/41482159

REGISTER: ECTRIMS Patient Community Day
https://ectrimspatientcommunity.eu

SUPPORT: National MS Society Research
https://nationalmssociety.org/research

JOIN: The RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

REVIEW: Give RealTalk MS a rating and review
http://www.realtalkms.com/review


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RealTalk MS Episode 465
Guest: Dr. Avinash Chandra

Frequently Asked Questions

What is the state of MS care in Nepal?

MS care in Nepal has historically been underdeveloped, with the condition long considered rare or non-existent. Specialists like Dr. Avinash Chandra have worked to build diagnostic and care frameworks from the ground up, educating doctors and co-founding the MS Society of Nepal.

How are MS diagnostics adapted in resource-limited countries like Nepal?

Physicians use local adaptations such as shortened, highly sensitive MRI sequences and optical coherence tomography (OCT) for eye evaluations to reduce the financial burden of diagnostic testing for patients.

What did the study on sex differences in healthcare use before MS find?

The study found that males who eventually developed MS had consistently higher rates of doctor visits—ranging from nervous system and mental health to respiratory and injury-related visits—up to a decade before their first MS symptom compared to males without MS.

What are the recommendations for autologous hematopoietic stem cell transplantation (aHSCT) in MS?

European guidelines recommend aHSCT as an escalation option for individuals under 45 with an EDSS score of 5.5 or lower who experience high clinical and MRI activity despite using high-efficacy DMTs.

WEBVTT

00:00:18.120 --> 00:00:21.480
It's July 28th, and we have a lot to talk about.

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I consider research to be the engine that drives the future.

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And when I think about how far we've come in just the past few years,

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I can't help but feel optimistic about the prognosis for someone living with MS today.

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But things could be very different. Imagine for a moment that whatever country

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you happen to be living in determined that MS didn't really exist there.

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That means there's no MS care, no MS society, no MS research.

00:00:53.600 --> 00:00:58.760
My guest this week is Dr. Avinash Chandra. During his fellowship at the University

00:00:58.760 --> 00:01:04.610
of Buffalo, Dr. Chandra trained at a world-class MS center to become an MS specialist.

00:01:05.170 --> 00:01:11.540
Then he returned home to Nepal and discovered that MS was considered non-existent.

00:01:12.190 --> 00:01:17.300
But Dr. Chandra knew it wasn't. So he began creating a framework for MS care

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that hadn't existed before.

00:01:19.600 --> 00:01:25.190
He went to medical schools to educate doctors. He co-founded the MS Society of Nepal.

00:01:25.800 --> 00:01:29.750
And if you look up what it means to be a difference maker, I think you're going

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to find Dr. Chandra featured prominently in that description.

00:01:34.020 --> 00:01:37.200
But before we get to my conversation with Dr. Avinash Chandra,

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there are a few other things that you should know about.

00:01:45.340 --> 00:01:50.880
Women make up about 70% of the MS population, but it's been well established

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that when men are diagnosed with MS, they tend to experience faster and more

00:01:56.220 --> 00:01:58.430
severe disease progression than women.

00:01:59.180 --> 00:02:03.770
Now, why this happens isn't clear. Experts believe that hormones,

00:02:03.770 --> 00:02:08.210
the immune system itself, along with lifestyle and environmental factors,

00:02:08.580 --> 00:02:11.560
all contribute to this difference in disease course.

00:02:12.600 --> 00:02:17.790
Research, most notably research from Dr. Helen Tremlett's lab at the University

00:02:17.790 --> 00:02:22.940
of British Columbia, shows that people with MS have a higher use of health care

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in the years before they experience their first MS symptom.

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This phase of nonspecific signs and symptoms before the onset of a disease is

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called the prodromal phase,

00:02:35.840 --> 00:02:40.870
and researchers are interested in understanding the MS prodrome because it may

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point to how MS actually begins.

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A new study from Dr. Tremlett's lab analyzed healthcare use in Ontario,

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Canada between 1991 and 2020.

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The researchers were able to identify 35,018 people with MS,

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and as you would expect, 69% of them were women.

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Each of these individuals was statistically matched with five people who didn't have MS.

00:03:10.010 --> 00:03:15.160
They were matched by sex, birth year, the area they lived in when they experienced

00:03:15.160 --> 00:03:19.350
their first MS symptom, and the length of time they lived in Ontario.

00:03:20.180 --> 00:03:27.010
So, the research team grouped these 35,018 people with MS by sex and compared

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how and how often they accessed healthcare

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compared with 136,007 people without MS.

00:03:35.860 --> 00:03:41.190
And the researchers discovered clear differences in healthcare use by sex up

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to a decade before the onset of MS.

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The research team discovered that compared to those people of the same sex without MS,

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beginning 10 years before MS onset, males had consistently higher rates of nervous

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system-related visits to the doctor than females.

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These rates peaked in the year before the onset of MS at 28.6 times higher for

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males and 13.6 times higher for females.

00:04:12.950 --> 00:04:18.140
Beginning four years before MS onset, males had consistently higher rates of

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mental health visits to the doctor than did females, peaking in the year before

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MS onset at three times higher for males

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and 2.1 times higher for females.

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Beginning three years before MS onset, males had higher rates of ill-defined

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signs or symptoms and injury-related visits to the doctor than did females.

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Males also had higher rates of respiratory-related, genital,

00:04:45.440 --> 00:04:51.310
and urinary-related visits than females beginning two years before MS onset.

00:04:51.820 --> 00:04:56.530
And in the year before MS onset, males had higher rates of healthcare usage

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for muscle and skeleton-related, digestive and infection-related visits to the

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doctor than did females.

00:05:04.500 --> 00:05:09.830
In all cases where sex differences were found, males who eventually developed

00:05:09.830 --> 00:05:16.330
MS had consistently higher doctor visit rates than females who eventually developed MS.

00:05:17.020 --> 00:05:21.640
It's one more piece of evidence that demonstrates men with MS have a more severe

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disease course that actually begins up to a decade before they develop the first typical MS symptom,

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which is also a significant clue that males and females living with MS have

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probably carried the disease for many years before they experience that first MS symptom.

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Now, if you'd like to review the details of this study, you'll find a link in today's show notes.

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And if you'd like to review my friend Sharon Roman's excellent plain English

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summary of this research, you'll also find that link in today's show notes.

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Finally, if you'd like to listen to Dr. Helen Tremlett explain her work exploring

00:06:01.780 --> 00:06:09.030
this prodromal phase of MS, you'll find that conversation in episode 321 of Real Talk MS.

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And you'll find that link in today's show notes as well.

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Today's high-efficacy disease-modifying therapies have been shown to do a great

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job at delaying progression and allowing people with relapsing-remitting MS

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to truly live their best lives.

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Unfortunately, not everyone with relapsing-remitting MS responds to these high-efficacy DMTs.

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So if you're someone living with a relapsing form of MS, what do you do when

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the high-efficacy disease-modifying therapies stop working for you?

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Well, in a 2025 consensus statement, the European Committee for Treatment and

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Research in MS and the European Society for Blood and Marrow Transplantation

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recommended autologous hematopoietic stem cell transplantation,

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or AHSCT,

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As an escalation option for highly active relapsing MS after the failure of

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at least one high-efficacy DMT and before irreversible damage. develops.

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A research team at the University of California, Irvine, reviewed more than

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30 years of data related to treating MS with autologous hematopoietic stem cell

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transplantation and discovered that AHSCT

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produced higher rates of what's referred to as no evidence of disease activity,

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which means no relapses and no new lesions.

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In fact, AHSCT produced lower annualized relapse rates and sustained functional

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gains compared with disease-modifying therapies in individuals.

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One of the studies reviewed was a randomized Phase III trial that enrolled 110

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participants with highly active relapsing-remitting MS.

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The study participants were evenly split into two groups.

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One group received AHSCT and the other group received disease-modifying therapy.

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The outcome of this clinical trial really speaks for itself.

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Disease progression occurred in 6% of the transplant recipients,

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compared with 67% of those on DMTs.

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And after 5 years, 85% of the transplant recipients remained relapse-free,

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compared with just 3% of those on DMTs.

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Transplant recipients also experienced improvement in their walking speed and

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arm function while accumulating fewer new lesions on MRI.

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While AHSCT is still considered experimental in the United States,

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European guidelines recommend AHSCT

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for people with MS who are under 45 years old with an expanded disability status

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scale or EDSS score of 5.5 or lower

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and high clinical and MRI activity despite using DMTs.

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Results from studies that focused on progressive MS have not been as positive,

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and there are multiple factors to consider in determining whether someone is

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a viable candidate for AHSCT.

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Meanwhile, if you'd like to review this analysis, you'll find that link in today's show notes.

00:09:32.700 --> 00:09:37.430
On this podcast, we often talk about the more than 20 different disease-modifying

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therapies that are available today.

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Well, research that's been funded by the National MS Society has contributed

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to the development of every one of those FDA-approved MS therapies.

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Today, more than half of the society-funded research projects are focused on

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stopping MS in its tracks.

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That means no new symptoms, no new damage, no more living with the uncertainty

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of what tomorrow might bring.

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There are more than 30 research projects being funded by the Society that are

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advancing biomarker research that could detect MS earlier, and early intervention

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directly translates to a better outcome for the patient.

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More than 50 society-funded research projects are working toward restoring myelin

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that's been damaged by MS, and that means regaining the function that MS has taken away.

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The pace of scientific discovery has never moved as fast as it's moving today,

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and with 80 years of progress and over a billion dollars of research investment

00:10:40.760 --> 00:10:43.290
behind us, we're at a pivotal moment.

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It's a moment for you to step up and support MS Research by supporting the National MS Society.

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Your donation will help power over $100 million in active research,

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accelerating the work that brings us closer to ending MS.

00:11:00.530 --> 00:11:04.850
We're in the final few days of the MS Society's research fundraising campaign.

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That means when you make your donation by July 31st, 100% of your gift will go to MS Research.

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Every donation in any amount counts. So if you're able, please visit nationalmssociety.org

00:11:21.120 --> 00:11:25.690
slash research and make a donation in whatever amount works for you.

00:11:26.420 --> 00:11:28.840
You'll find that link in today's show notes.

00:11:30.250 --> 00:11:33.810
While we're talking about research, I'll also mention that we're less than 90

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days away from the joint meeting of the European Committee for Treatment and Research in MS

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and the Americas Committee for Treatment and Research in MS,

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better known as the Joint ECTROMS and ACTROMS meeting.

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This is the largest MS research conference in the world, and it takes place

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October 21st, 22nd, and 23rd in Toronto, Canada.

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I want to remind you that on October 23rd from 3 to 6 p.m. Eastern Time,

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you can participate in the 2026 ECTROMS Patient Community Day.

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This is a live in-person and online event where you'll see some of the top MS

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experts in the world explaining the research that was presented at this joint

00:12:18.570 --> 00:12:22.500
ECTROMS-ACTROMS meeting in easy-to-understand language.

00:12:23.140 --> 00:12:26.910
You'll even be able to submit your own questions and have them answered by some

00:12:26.910 --> 00:12:30.120
of the best and brightest MS researchers in the world.

00:12:30.690 --> 00:12:36.210
I hope you'll take a moment to visit ectrumspatientcommunity.eu and register

00:12:36.210 --> 00:12:38.900
for what I know is going to be an amazing program.

00:12:39.150 --> 00:12:42.090
And you'll find that link in today's show notes.

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From discussing the very latest cutting-edge MS research and treatment,

00:12:46.810 --> 00:12:52.350
we're going to switch gears in a big way and talk with Dr. Avinash Chandra about

00:12:52.350 --> 00:12:57.360
his return to Nepal following the completion of his fellowship in the United States.

00:12:58.120 --> 00:13:04.090
Dr. Chandra returned to Nepal to discover that MS was considered virtually non-existent.

00:13:04.600 --> 00:13:10.180
So there was no MS care, no MS research, no MS society.

00:13:10.500 --> 00:13:13.990
And we'll learn firsthand what he decided to do about that.

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In a moment, we'll meet my guest, Dr. Avinash Chandra.

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What happens when you train at a world-class MS center in the U.S.,

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return home to practice, and discover the disease you specialize in is officially

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considered rare to non-existent in your country?

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My guest today is Dr. Avinash Chandra, a neuroimmunologist and the co-founder

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of the Multiple Sclerosis Society of Nepal, who's on a mission to build a diagnostic

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and care network from the ground up.

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Welcome to the podcast, Dr. Chandra. It's an honor to have you here.

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Thanks. Thanks so much, Jon. Thanks for having me. I'm really excited and delighted to be here.

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And talking to you, it feels like I'm back in the U.S. again when I was doing fellowship there.

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And it's been quite a long time. I'm back to Nepal and talking to you feels

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like I'm again in the U.S. So thanks. Thanks for having me.

00:14:15.930 --> 00:14:20.960
Well, as we're saying, you did your neuroimmunology and MS fellowship training

00:14:20.960 --> 00:14:26.740
in New York at Buffalo General Hospital, where you saw patients pretty much every day.

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As I just mentioned, when you returned to Nepal, the landscape was completely

00:14:31.770 --> 00:14:37.700
different, and MS was widely considered a rare or virtually nonexistent condition.

00:14:38.620 --> 00:14:42.810
What was that initial culture shock like for you as a clinician?

00:14:43.200 --> 00:14:45.280
And how did you begin to bridge that gap?

00:14:45.910 --> 00:14:53.210
Right, true. I mean, it's back 10 years, almost a decade back when I was in the U.S.

00:14:53.620 --> 00:15:01.600
Before that, even while in medical school, and to tell you the surprise that still in medical books,

00:15:02.540 --> 00:15:09.390
multiple sclerosis is written as not so common disease for Nepal and these kind

00:15:09.390 --> 00:15:13.590
of allied countries, like the countries which are near equator.

00:15:14.020 --> 00:15:18.540
So it's not so commonly found. It's still written in medical book.

00:15:18.840 --> 00:15:24.730
And back 10 years back, when we were studying in our medical school,

00:15:24.730 --> 00:15:30.300
it was just like that, that even we were taught that multiple sclerosis is more.

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For Western populations,

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the countries which are in the polar region.

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So that was pretty much taught and that was cemented in our mind.

00:15:42.480 --> 00:15:50.460
So when I was in, before going to U.S., I was in Singapore for a while.

00:15:50.460 --> 00:15:54.800
So in Singapore, also multiple sclerosis was not so much heard of.

00:15:55.310 --> 00:15:58.730
Not that it was very rare, but it was not very heard of.

00:15:59.140 --> 00:16:07.790
So when I went to U.S. and I saw the problem there, it was like there were lots

00:16:07.790 --> 00:16:11.460
of researches going on as it's going on right now.

00:16:11.460 --> 00:16:16.380
But back then there were lots of trials and lots of pathophysiology,

00:16:17.280 --> 00:16:20.510
to be understood for multiple sclerosis going on so,

00:16:21.010 --> 00:16:24.660
they were like oh we have vitamin d deficiency

00:16:25.040 --> 00:16:30.040
and we have this and this deficiency that's why we have more ms in in in this

00:16:30.420 --> 00:16:35.850
region and because you guys live near equator you get more sunlight you have

00:16:35.850 --> 00:16:39.730
more vitamin d you have less ms so that's what,

00:16:40.550 --> 00:16:47.440
was the scenario. But when I came back, when I started working.

00:16:49.500 --> 00:16:55.940
As a neurologist and especially an MS specialist, it was a completely different scenario.

00:16:56.260 --> 00:16:59.330
And then I wrote one paper.

00:17:00.300 --> 00:17:04.920
I did one research, a small research in hospital, and I tried to question,

00:17:06.150 --> 00:17:11.870
this dictum that are we really vitamin D deficient I mean if we are vitamin

00:17:11.870 --> 00:17:14.300
D deficient is that really

00:17:14.730 --> 00:17:19.320
the the the reason that we have MS because MS was not that

00:17:19.700 --> 00:17:25.350
less as it was expected so that was my surprise and just to tell you one scenario

00:17:25.350 --> 00:17:28.990
like I'm not just practicing multiple sclerosis in Nepal

00:17:29.290 --> 00:17:34.890
I have to practice the whole neurology because we are only 40-45 neurologists

00:17:34.890 --> 00:17:37.260
all over Nepal of 30 million people,

00:17:38.030 --> 00:17:43.690
So we do not have that liberty like my professors or my seniors,

00:17:43.690 --> 00:17:45.950
my mentors had in the U.S.

00:17:45.950 --> 00:17:48.650
That they would just practice multiple sclerosis.

00:17:48.850 --> 00:17:51.360
I'm not giving that liberty.

00:17:52.000 --> 00:17:58.060
I understand. Diagnosing MS in the West relies on the McDonald criteria,

00:17:58.470 --> 00:18:01.740
early MRI tracking, lumbar punctures.

00:18:02.320 --> 00:18:07.000
In Nepal, where health insurance coverage is minimal and the vast majority of

00:18:07.000 --> 00:18:12.660
health care costs are paid out of pocket, what does a diagnostic journey look like for a patient?

00:18:13.580 --> 00:18:20.870
Yes, that's true. I mean, all those guidelines that tell us how to diagnose

00:18:20.870 --> 00:18:23.050
or how to treat multiple sclerosis,

00:18:24.070 --> 00:18:28.630
cannot be implemented all 100% in Nepal.

00:18:29.410 --> 00:18:33.410
And that's what makes this disease as an expensive disease.

00:18:33.680 --> 00:18:40.310
So it's still regarded as the multiple sclerosis is regarded as a disease for

00:18:40.310 --> 00:18:47.130
the richer people because you have to get one MRI the MRI would cost almost like,

00:18:47.870 --> 00:18:52.390
let's say $150 and for a family,

00:18:53.170 --> 00:19:03.010
the whole the income for a month would be like under 50 to $200 $300 like for the average family.

00:19:04.180 --> 00:19:12.100
So it's not that easy to just get an MRI, which is one of the essential parts to see MS.

00:19:12.650 --> 00:19:19.000
And forget about the lumbar puncture or the other tests, because all of them

00:19:19.000 --> 00:19:23.360
add up the investigation prices.

00:19:24.300 --> 00:19:34.090
But given that, I mean, we still have the same diagnostic criteria and we still do multiple MRIs.

00:19:34.470 --> 00:19:41.060
We do lumbar punctures. We send oligoclonal bands and all those things that are required for MS.

00:19:41.310 --> 00:19:47.160
We do the OCTs for eyes to recognize MS.

00:19:47.530 --> 00:19:52.010
So we do all those kind of things. But yes, just like.

00:19:56.410 --> 00:20:04.590
When you have less abundance, you have less resources, you try to innovate more to make it adapted.

00:20:05.210 --> 00:20:12.000
Like the things that we have, we do not have that liberty to have all those tests at a time.

00:20:12.000 --> 00:20:19.000
So what we have, like I have innovated a few of the things that make us easier

00:20:19.400 --> 00:20:23.140
and cheaper for diagnosing MS.

00:20:23.140 --> 00:20:30.850
Like for MRI, we have shortened some sequences in the MRI, like the MRI that we should do.

00:20:31.160 --> 00:20:36.860
We do not do in the same way. We just pick up the highly sensitive sequences

00:20:36.860 --> 00:20:41.610
in MRI that would catch multiple sclerosis.

00:20:41.950 --> 00:20:49.380
So we just do that one and that brings down the cost to almost like 50% lesser than it should be.

00:20:50.090 --> 00:20:56.530
So we do like that. We like for oligoclonal bands and all those we try to prefer.

00:20:56.930 --> 00:21:04.590
I'm just giving you some examples like we try to prefer the OCT and the decoherence tomography for eyes.

00:21:06.260 --> 00:21:11.210
Rather than just relying on oligoclonal bands because for the lab part,

00:21:11.210 --> 00:21:16.520
we do not have everything available in Nepal. So we have to, again, outsource.

00:21:16.870 --> 00:21:24.330
So we have to send it to India and then get back the result from India and that

00:21:24.330 --> 00:21:27.450
cost the time and as well as the price.

00:21:28.110 --> 00:21:34.750
So we have innovated a few of the things to diagnose MS and that's how we have been working on.

00:21:34.910 --> 00:21:40.140
I know that you're known for creating, I think, what you call local adaptations

00:21:40.490 --> 00:21:43.600
when it comes to diagnosing MS.

00:21:44.020 --> 00:21:48.740
Let's talk about treatment for a second. When high-efficacy disease-modifying

00:21:48.740 --> 00:21:53.980
therapies are financially out of reach for a family, how do you approach treatment?

00:21:54.490 --> 00:22:00.550
What does that adaptive neuropharmacology look like in this context? Yeah.

00:22:02.150 --> 00:22:10.190
Yes, it's a very relevant thing because not just the diagnosing MS is expensive,

00:22:10.190 --> 00:22:12.470
the treating is more expensive.

00:22:12.880 --> 00:22:19.030
Just to give you an example, recently found medicine like Ocrelizumab,

00:22:19.450 --> 00:22:23.640
the one medicine that has been used so frequently for multiple sclerosis,

00:22:24.570 --> 00:22:32.550
costs almost like $800 for bringing it in Nepal. Just one shot.

00:22:33.370 --> 00:22:41.030
So one shot would cost $800, which is just unimaginable for an average family.

00:22:42.190 --> 00:22:45.430
And what would that average income look like for that family?

00:22:45.770 --> 00:22:51.650
So the average income, like I'm just talking about just the decent family,

00:22:52.430 --> 00:22:53.740
the middle class family.

00:22:53.960 --> 00:22:59.330
So the middle class family would have like, let's say, $500,

00:23:01.810 --> 00:23:04.130
to $600 per month.

00:23:04.530 --> 00:23:05.030
Per month.

00:23:05.330 --> 00:23:12.370
That's what income. Yeah, per month for a family of like four people, at least of four people.

00:23:12.370 --> 00:23:20.380
And the socio-economic scenario in Nepal is that we usually have the joint families,

00:23:20.380 --> 00:23:26.970
like we live with our parents and the children, everyone lives in the same roof.

00:23:28.190 --> 00:23:33.860
So minimum of the four to six families members are in one family and average

00:23:34.280 --> 00:23:41.090
family would earn around $500 to $600, not more than that.

00:23:41.790 --> 00:23:52.270
And just amazing that someone if gets MS, just to diagnose one MRI would cost around $100, $150.

00:23:52.730 --> 00:23:58.070
Dollars and one lab test would like for lumbar puncture or some kind of.

00:24:00.270 --> 00:24:06.390
Investigations would cost another let's say like 70 80 dollars,

00:24:07.280 --> 00:24:12.430
so altogether the diagnosing becomes so so highly expensive and especially when

00:24:12.430 --> 00:24:14.720
you are paying out of your pocket you have to

00:24:15.070 --> 00:24:20.070
you have to go for a month run the family for a month and then get your investigations

00:24:20.380 --> 00:24:22.630
So that's really becomes very hard.

00:24:23.540 --> 00:24:28.040
To do and especially that becomes harder for the doctors too,

00:24:28.940 --> 00:24:33.530
to convince them that you have to get this investigation done or you have to

00:24:33.530 --> 00:24:35.880
get this treatment done and,

00:24:36.680 --> 00:24:41.740
because we are trying to save the people we are trying to to halt the disease

00:24:42.100 --> 00:24:47.230
but we are also seeing the family who are dependent on them for the money,

00:24:48.100 --> 00:24:52.600
so that becomes very problematic all the time for us and,

00:24:53.560 --> 00:25:00.150
especially similarly for the treatment so unfortunately we have to still rely

00:25:00.150 --> 00:25:02.820
heavily on all the the previous we,

00:25:04.160 --> 00:25:09.890
we call it trivial medicines like the medicines that were used almost like 50

00:25:09.890 --> 00:25:17.020
30 40 years back in the US, like we call it azithoprene, this kind of.

00:25:18.920 --> 00:25:25.390
Medicines that used to be the very previous primitive kind of medicines.

00:25:25.630 --> 00:25:32.100
We still rely more on them because not everyone would afford to have the shot,

00:25:32.460 --> 00:25:37.770
like the beta interferon shot, like we say the popularly known Avonax.

00:25:37.980 --> 00:25:47.050
So one Avonax shot would cost almost like $100 to $110 per week,

00:25:47.050 --> 00:25:50.960
which is because that short needs every week short.

00:25:51.300 --> 00:25:56.280
So every week $100 is just out of question for many families.

00:25:57.010 --> 00:25:59.310
Only few people who can afford.

00:26:00.180 --> 00:26:03.840
I understand. When I introduced you, I mentioned that you were the co-founder

00:26:03.840 --> 00:26:07.370
of the MS Society in Nepal. How did that come about?

00:26:08.210 --> 00:26:17.240
Oh yes i mean uh with all these like when i when i uh went to u.s for multiple sclerosis fellowship,

00:26:18.260 --> 00:26:23.170
back when i came back i mean i used to talk with friends from from,

00:26:23.780 --> 00:26:28.270
country and they used to tell tell me that why did you do the fellowship in

00:26:28.270 --> 00:26:33.480
in in a disease which is rare like you will seldom get the patients and,

00:26:34.100 --> 00:26:40.240
i i used to think that it's not it shouldn't be rare that as rare as it is because

00:26:40.680 --> 00:26:43.030
the pathophysiology that is behind,

00:26:43.480 --> 00:26:47.970
that that what we know is is something that that is not just related with the

00:26:47.970 --> 00:26:53.060
environment or that that is not just only related with with the places we live

00:26:53.060 --> 00:26:55.990
in that that's something very different because

00:26:56.430 --> 00:27:01.280
our immune system is deranged and that's what brings MS,

00:27:02.000 --> 00:27:03.850
to just make it simple.

00:27:04.900 --> 00:27:09.710
And immune system is such a complex thing that you cannot just have one factor.

00:27:11.060 --> 00:27:18.840
That would just create. So not all these things are not just the one reason to have MS.

00:27:19.340 --> 00:27:22.830
And that's what happened when I came back, when I started seeing the patients

00:27:22.830 --> 00:27:27.380
and just the scenario that you can imagine that such an expensive investigation,

00:27:27.380 --> 00:27:32.910
such an expensive treatment and such a less aware people and the doctors.

00:27:33.270 --> 00:27:39.720
Because multiple sclerosis itself has such a diversified symptoms like someone

00:27:39.720 --> 00:27:43.930
just with the tingling numbness would be diagnosed as MS.

00:27:44.170 --> 00:27:47.710
Someone with just a visual problem would be diagnosed as MS.

00:27:47.970 --> 00:27:50.970
Someone just having fatigue would also be diagnosed as MS.

00:27:50.970 --> 00:27:58.520
It's such a varied kind of symptoms that the disease itself used to be called

00:27:58.520 --> 00:28:04.060
as rare and that's how people were not much paying attention to this disease.

00:28:04.340 --> 00:28:12.950
And symptom itself is so confusing that the doctors would just simply skip with the symptoms.

00:28:12.950 --> 00:28:21.010
They would not even think for MS because for them MS would just be the visual problem back then.

00:28:21.510 --> 00:28:26.950
And then I started realizing that it's not just the problem for not getting

00:28:26.950 --> 00:28:33.740
MS. It's because we are most likely we are just having the under diagnosis of this disease.

00:28:34.210 --> 00:28:39.820
Or we are having misdiagnosis and that's where I started thinking that no we

00:28:39.820 --> 00:28:42.180
have to create the awareness more.

00:28:43.080 --> 00:28:48.030
First, let's work on the awareness. And that's what I started on my own.

00:28:48.030 --> 00:28:52.400
I started having some free camp, the health camp.

00:28:52.400 --> 00:28:57.760
I started going to medical school, teaching the medical students as well as

00:28:58.200 --> 00:29:00.370
the doctors, my colleagues.

00:29:00.370 --> 00:29:05.390
Through my colleagues I started just having the networking and I saw that.

00:29:06.560 --> 00:29:11.690
Just in like few months of time people the doctors the student were interested

00:29:11.690 --> 00:29:18.030
getting interested in MS and I started getting more referrals for the patients.

00:29:19.140 --> 00:29:26.000
And then I thought that, no, now is the time when we need to create one society.

00:29:26.000 --> 00:29:32.410
Because when I was in the U.S., I was pretty much closer to seeing MSIF,

00:29:32.930 --> 00:29:35.010
the International Federation for MS.

00:29:35.690 --> 00:29:42.990
And New York itself was a big hub for multiple sclerosis consortium.

00:29:43.650 --> 00:29:49.750
They had like lots of bigger database. So that's what I had learned there and

00:29:49.750 --> 00:29:53.900
I started thinking that, no, we have to create some place where,

00:29:54.950 --> 00:30:02.650
we can collect and we can have at least a simple database for multiple sclerosis.

00:30:03.300 --> 00:30:10.520
And that's what started coming idea and then I with my few colleagues I started

00:30:10.520 --> 00:30:13.470
thinking that no we have to create one society where,

00:30:14.210 --> 00:30:17.720
and our society should be different because most of the society where the doctors

00:30:17.720 --> 00:30:20.840
create the society that is mostly for the doctors only,

00:30:21.820 --> 00:30:27.720
so I thought it in different way that this society should be a place where the

00:30:27.720 --> 00:30:33.070
doctors meet with the the patients So the caregivers and the caretakers,

00:30:33.360 --> 00:30:36.210
all of them should be on the same platform

00:30:36.510 --> 00:30:42.100
and where we can share, not just the research, because research should be open to everyone.

00:30:43.190 --> 00:30:46.330
Whoever knows something about the research should have the access.

00:30:46.330 --> 00:30:50.770
That's what I believe. So this society came into light.

00:30:51.260 --> 00:30:57.280
Without a centralized national registry or database, tracking the true burden

00:30:57.280 --> 00:30:59.680
of MS can become very difficult.

00:31:00.330 --> 00:31:07.530
How is the MS Society Nepal working to capture data and build a truer picture of MS in Nepal?

00:31:08.620 --> 00:31:14.830
Yes that's really true thing that if we do not have the central data it's very

00:31:14.830 --> 00:31:18.390
difficult to collect the data and that's what we are facing the problem.

00:31:19.700 --> 00:31:25.770
Right now we do not have an exact data that okay this much of the patient we

00:31:25.770 --> 00:31:28.740
have but what we are trying to do is,

00:31:29.790 --> 00:31:36.700
like through the networking and awareness we are trying to capture each hospitals where they would,

00:31:37.660 --> 00:31:42.780
not hesitate to share the data whatever the data they have and then we can pull

00:31:42.780 --> 00:31:47.900
up those all data to one society the multiple sclerosis society would have that

00:31:47.900 --> 00:31:51.960
all data and we can look up into so this year we,

00:31:52.720 --> 00:31:59.140
we created a lot of this kind of networking we had held lots of meetings with

00:31:59.140 --> 00:32:05.020
lots of people and we came to know that we have at least 350.

00:32:07.200 --> 00:32:11.440
Patients who are taking the medicines those all expensive medicine that we think of,

00:32:12.020 --> 00:32:16.760
so there are more than 350 people who are taking some kind of shorts or some

00:32:16.760 --> 00:32:23.400
kind of oral medicines all of them expensive not just those all old previous medicines so,

00:32:24.140 --> 00:32:30.380
that's how like I'm having but yes as you rightfully said that we if we do not

00:32:30.380 --> 00:32:34.100
have the centralized data we do not have that pretty much,

00:32:34.960 --> 00:32:39.580
reliable data but this is all the data that is coming from all the hospitals

00:32:39.580 --> 00:32:44.900
and we have pulled up and we have seen that almost like four out to five hundred patients are there,

00:32:45.700 --> 00:32:50.960
having the treatment and the people who have lost to follow-up or who are not

00:32:50.960 --> 00:32:54.750
having treatment are more than what we are thinking.

00:32:55.590 --> 00:33:00.840
We have many listeners in the international MS community, from researchers in

00:33:00.840 --> 00:33:05.660
the U.S. to advocates in Europe and, of course, patients and caregivers everywhere.

00:33:06.440 --> 00:33:10.730
What's the most critical thing people need to understand about the realities

00:33:10.730 --> 00:33:15.230
of chronic neurological care in resource-constrained settings?

00:33:16.180 --> 00:33:21.800
Yes, I mean, I must thank you for giving me this opportunity to speak up here

00:33:21.800 --> 00:33:27.390
and I really hope the people listening to this podcast,

00:33:28.360 --> 00:33:35.810
I would really appreciate everyone and request everyone to stand in the shoes,

00:33:36.510 --> 00:33:40.010
of all those resource limited settings and see how,

00:33:40.770 --> 00:33:46.120
difficult It is not just for the patients that who gets the disease and who

00:33:46.120 --> 00:33:52.240
has to fight this disease along with the treatment but for even the caregivers who has to.

00:33:54.110 --> 00:34:02.080
Create some way where he has to treat the patient and get the diagnosis right.

00:34:02.770 --> 00:34:08.890
So, yes, it is very difficult for working in a resource-limited setting.

00:34:08.890 --> 00:34:15.980
But, yes, if there are any opportunities, I mean, that's what I really would

00:34:15.980 --> 00:34:18.760
like to see, that all the developed,

00:34:19.710 --> 00:34:24.540
places where they are working very well with multiple sclerosis,

00:34:24.940 --> 00:34:28.530
they should join in hands with us and help us.

00:34:29.070 --> 00:34:36.560
Not just Nepal, all the least developing places where multiple sclerosis is

00:34:36.560 --> 00:34:41.190
such a big problem for all those resource-limited settings.

00:34:41.570 --> 00:34:47.200
So, I mean, all the places who are more developed should pull,

00:34:47.640 --> 00:34:52.060
should join in hands with all these kind of resource-limited settings and,

00:34:53.320 --> 00:34:58.930
should create some ways where every one of us would come to the same pace.

00:34:59.540 --> 00:35:04.480
Dr. Avinash Chandra, I want to thank you for your remarkable efforts to diagnose

00:35:04.480 --> 00:35:10.600
and treat people living with MS in a country that didn't know it even existed.

00:35:10.930 --> 00:35:12.790
Thanks so much for talking with me today.

00:35:13.280 --> 00:35:17.670
Thank you. Thank you so much for having me. And I really thank every listeners

00:35:17.670 --> 00:35:21.480
that, yes, this MS, we will be fighting.

00:35:21.820 --> 00:35:24.230
We all together are on the same fight.

00:35:25.000 --> 00:35:28.020
It doesn't make a difference being a doctor or being a patient,

00:35:28.020 --> 00:35:32.770
but we all are fighting this disease. So we will fight to win. Thank you.

00:35:33.740 --> 00:35:38.260
That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered

00:35:38.260 --> 00:35:40.040
by the National MS Society.

00:35:40.430 --> 00:35:44.780
And you can share this episode of the podcast by letting your friends or family

00:35:44.780 --> 00:35:53.040
members know that all they have to do is point their web browser at realtalkms.com slash 465.

00:35:53.740 --> 00:35:57.940
You'll find that link in today's show notes so you can easily copy and paste

00:35:57.940 --> 00:36:00.440
it right into an email or a text.

00:36:01.530 --> 00:36:07.490
The subject more of you ask about than almost anything else is diet and MS.

00:36:08.030 --> 00:36:15.100
And next week, Dr. Tyler Titcomb joins me for a deep dive into understanding the impact of diet on MS.

00:36:15.800 --> 00:36:19.730
Dr. Titcomb is a registered dietitian in the Department of Neurology at the

00:36:19.730 --> 00:36:21.810
University of Kansas Medical Center,

00:36:22.300 --> 00:36:26.420
where, in addition to seeing patients, he's working hard to spread the word

00:36:26.680 --> 00:36:30.880
that dietitians need to be a part of every MS care team.

00:36:31.630 --> 00:36:35.560
I hope you're planning to join me next week when I'm devoting the entire episode

00:36:35.830 --> 00:36:37.960
to my conversation with Dr. Titcomb.

00:36:38.850 --> 00:36:45.500
I'm Jon Strum. Thanks for listening. Stay safe and make healthy choices.