Multiple Sclerosis in Nepal is still often overlooked, diagnosed late, and difficult to treat because access to MRI, neurologists, and affordable medication remains limited for many people. In this interview, Dr. Ayush Chandra and Dr. Avinash Chandra share how geography, costs, awareness, and advocacy shape MS care in Nepal — and why hope, education, and international collaboration can make a real difference for people living with MS and their families.
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Introduction
Nele von Horsten:
Hello Ayush, hello Avinash. It is such a pleasure to have you on the show, and hello to Nepal.
Dr. Ayush Chandra:
Thank you, Nele. It is really my pleasure to talk to you, to our German colleagues, and also to our friends from Germany. It feels like I am back with my old friends.
Dr. Avinash Chandra:
Thank you for having me as well, Nele.
Personal Background
Ayush, could you briefly introduce yourself and give us a short overview of your work with the Multiple Sclerosis Society of Nepal?
Dr. Ayush Chandra:
I am Dr. Ayush Chandra. I completed my Bachelor of Medicine and Bachelor of Surgery. Professionally, I am a medical doctor.
I am also one of the founders and the secretary of the Multiple Sclerosis Society of Nepal, short MSSN. Our slogan is “MS is on Mission” for me, in the world and my personal and professional interest.
I am currently a neuropharmacology and neurology resident, and I am very involved in multiple sclerosis care, research, and patient advocacy.
Avinash, please introduce yourself and tell us about your clinical work as a neurologist caring for people with MS in Nepal.
Dr. Avinash Chandra:
I am Dr. Avinash Chandra. Ayush and I have the same last name, but we are actually very far from each other.
I am a neurologist by profession. I did my neurology residency several years back, almost 13 years ago. I specialized in neuroimmunology and multiple sclerosis at SUNY in New York.
I was trained at Buffalo General Hospital, where I saw multiple sclerosis patients and several other tests and workups related to MS almost every day.
When I came back to Nepal, I realized that things were very different here. During my medical school and residency in Nepal, I had rarely seen MS cases. Multiple sclerosis was considered very rare. But after training in the United States, I understood that many things I had never seen before were actually very relevant to our patients in Nepal as well.
Now I work as a general neurologist, but I see many MS patients, as well as other neuroimmunological conditions. I am also passionate about research. I have authored and co-authored papers in national and international journals, and I advocate for neurology and MS awareness in Nepal.
Nele von Horsten:
I think that is a big bias, that people thought MS was only a disease of the Western world. But we were just not looking closely enough.
Personal MS Awakening
Ayush, what first drew your attention to MS care in Nepal, and why has this topic become important to you personally?
Dr. Ayush Chandra:
My interest in multiple sclerosis grew through my exposure to neurology and conversations with patients.
In my third year of medical school, I went to the neurology department as an elective. I was very interested in neurology because I liked communicating with patients. I did my very best to support them.
Then I met a young MS patient who had been visiting the outpatient department repeatedly. He shared his story with me. He had experienced long delays in diagnosis. He faced many barriers to treatment in Nepal.
That made me realize that this is a problem not only for him, but for many people in Nepal living with multiple sclerosis.
I also realized that MS was still very new for many people in Nepal. Some people had never heard of it. Even I had not known much about multiple sclerosis during my medical school years.
Can you share the story that changed your perspective?
Dr. Ayush Chandra:
There was a close friend of mine who moved to Canada for his studies. He developed double vision. That was his first symptom.
He went to doctors, but they were confused. They told him he might have overexerted himself, or that he should try supplements. Then his double vision changed into weakness in his lower limbs.
At that point, he could not walk, could not work, and could not attend classes. I suggested that he come back to Nepal so I could help him find someone who knew about MS.
When he returned, Dr. Avinash diagnosed him with multiple sclerosis. He improved after receiving treatment.
That experience was very personal for me. It showed me how difficult the path to diagnosis can be, even when someone is in a country with more resources.
MS Care in Nepal
Avinash, from your medical perspective, why is MS care in Nepal such a critical and urgent topic?
Dr. Avinash Chandra:
For many years, there was not enough discussion about multiple sclerosis in Nepal.
As Ayush already described, many doctors and many people did not know enough about MS. MS needs a lot of awareness, not only among patients, but also among doctors, consumers, and the general population.
Even four years ago, I was lobbying with the Ministry of Nepal because MS had not been recognized as a neurological problem by the government. Only about three years ago, multiple sclerosis was officially recognized as a neurological problem.
That was a major step. But awareness is still low.
In Nepal, MS is still in the category of very unnoticed diseases. One reason is that textbooks often describe MS as more prevalent in the Western world and less common in countries near the equator. But the notice is less in our country. That does not mean the disease is not there.
MS Numbers in Nepal
Avinash, for listeners around the world: how common does MS appear to be in Nepal, and how reliable are the numbers we currently have?
Dr. Avinash Chandra:
We are still weak in keeping reliable data.
There is no centralized database where all MS cases are registered. We do not yet have a national study, and we cannot rely on exact numbers from all over the country.
But I can tell you what I see in my practice. I see at least two new MS cases each month. When we talk among neurologists, we see that many of us are seeing MS patients regularly.
At the moment, I can tell you that we have around 850 patients in Nepal who are either diagnosed or under treatment. But I am sure the true number is higher.
Many cases are misdiagnosed or underdiagnosed. Some patients go to general physicians with nonspecific symptoms, such as fatigue, and never reach a neurologist.
Diagnosis Costs and Delays
In your clinical practice, how often do you see newly diagnosed MS patients, and what does a typical path to diagnosis look like?
Dr. Avinash Chandra:
The path to diagnosis is often expensive and delayed.
Multiple sclerosis is a very expensive disease from the perspective of a country like Nepal. Insurance coverage is not very common, so people often have to pay out of pocket.
To diagnose MS, we usually need an MRI. One MRI can cost around 100 US dollars. Sometimes we need a second MRI, and that can be around another 100 dollars.
For a Nepali patient, that is a lot of money. Many people have to decide whether they can afford the investigation.
This makes diagnosis difficult. Doctors may suspect MS, but then they must counsel the patient and family about the cost before moving forward.
Are there particular symptoms or situations where MS is often missed or recognized late in Nepal?
Dr. Avinash Chandra:
Yes. Many people are misdiagnosed or diagnosed very late.
For example, fatigue is often not recognized as a possible MS symptom. Patients may first visit an internist or psychiatrist. They may be told they have low magnesium, low calcium, or another electrolyte problem. They may receive supplements and wait.
The problem is that time passes, and the disease may move on.
I see this often. Many patients come late, after trying other explanations and treatments first.
Rural Access Barriers
What are the biggest barriers that prevent people in Nepal from receiving an early and accurate MS diagnosis?
Dr. Avinash Chandra:
The biggest barriers are cost, lack of awareness, and limited access to specialists.
Many people do not know about MS. Many general doctors may also not immediately think of it. MRI is expensive. Neurologists are concentrated mainly in larger cities.
All these barriers together delay diagnosis.
Ayush, how do geography and the concentration of specialists and MRI facilities in urban centers affect patients from rural or mountainous regions?
Dr. Ayush Chandra:
The geographical difficulty is huge.
Neurologists and MRI facilities are concentrated in the capital and larger cities. But Nepal has many remote areas and mountainous regions. There are places where even other doctors are difficult to reach, not only neurologists.
There are also cultural beliefs. In some places, people rely on traditional healing before going to a doctor. This can delay access to diagnosis and treatment.
Dr. Avinash Chandra:
In rural areas, many hospitals do not have enough specialist care. Some people must travel a long distance just to reach a city where a neurologist is available.
If someone from a village needs to come to Kathmandu, it can take days. They must pay for travel, accommodation, food, and medical tests. By the time they are diagnosed, the financial burden is already very high.
Cost of Care
Ayush, what does the cost of diagnostic tests or long-term treatment mean for patients and families in everyday life?
Dr. Ayush Chandra:
The average daily income in Nepal can be around 20 to 30 dollars. MRI can cost around 100 dollars.
So, for many people, even a diagnostic test is a major expense.
Dr. Avinash Chandra:
After diagnosis, the costs become even higher.
Some treatments are very expensive. Compared with people’s income, it is often not possible for patients to receive the diagnostic tests and all necessary treatments.
Because of costs, some people avoid treatment. Doctors may also feel restricted in what they can recommend.
Awareness Changes Care
Avinash, how do awareness, health literacy, or cultural beliefs influence when and where people first seek help for neurological symptoms?
Dr. Avinash Chandra:
Awareness improves diagnosis, prognosis, and disability outcomes.
We had a walkathon for multiple sclerosis awareness. It was one of the first events of its kind in Nepal, and many people joined.
If people know the symptoms, they can ask their doctor, “Could this be multiple sclerosis?” The goal is not to make everyone anxious, but to make sure MS is not missed.
The earlier we catch MS, the more treatment options we have. Early treatment can reduce relapses and reduce the chances of later disability.
Treatment Options in Nepal
Avinash, which MS treatments are realistically available for many patients in Nepal today?
Dr. Avinash Chandra:
If the disease is caught early, we have more options.
In the past, we had very few treatments. When I came back from the United States, Avonex was available there, but not in Nepal. I had one patient who was safe and could manage treatment, so we tried to bring Avonex from India or Germany.
For a long time, steroids were among the main options. But steroids are not enough as a long-term treatment.
Now things have changed. Rituximab has become part of the essential medicine list. This has been very important because rituximab is less expensive and does not require very frequent injections.
Rituximab is an anti-CD20 treatment. Anti-CD20 therapies target specific immune cells called B cells, which play a role in MS disease activity.
When standard MS therapies are too expensive or difficult to access, how do neurologists in Nepal adapt treatment strategies while still aiming for safe and effective care?
Dr. Avinash Chandra:
We usually counsel patients for rituximab. But for patients who cannot afford it, we sometimes use other immunomodulators.
One example is mycophenolate. It is commonly used in transplant patients. It suppresses immune activity and is often less expensive.
This is not the ideal situation, but we try to adapt based on what is possible and safe for the patient.
Relapse Treatment and Follow-Up
How do you approach relapse treatment, follow-up care, and long-term monitoring when resources are limited?
Dr. Avinash Chandra:
This is difficult.
Many people choose treatment based on cost. Some start treatment, but then they cannot come regularly for follow-up. With older medications, people needed frequent injections, and this made things even harder.
We now have more stations and trained people outside of the capital who can help administer rituximab injections. Patients can go to nearby centers, and local doctors can help.
But monitoring remains a challenge.
We try to keep in touch by phone. We ask about symptoms. If patients feel better, worse, or stable, we follow that information. But repeating MRIs is often not possible.
Ideally, we would monitor patients with imaging, blood tests, and eye examinations. In reality, follow-up often depends on what the patient can afford and access.
MS Society Advocacy
Ayush, what role does the Multiple Sclerosis Society of Nepal play in supporting patients, raising awareness, and advocating for better access to treatment?
Dr. Ayush Chandra:
MSSN acts as a bridge between patients, healthcare professionals, policymakers, and the wider community.
One of our key goals is to make sure that no person living with MS has to face the disease in isolation.
We provide education to patients and caregivers. We raise awareness through campaigns, such as on World MS Day. We organize support groups and bring together patients, caregivers, neurologists, and healthcare providers.
We also work to improve public understanding of multiple sclerosis. MS is still highly stigmatized in Nepal, as are many neurological conditions.
We are engaging with government stakeholders, healthcare institutions, and international organizations such as MSIF, the National MS Society, and MSSI. Our aim is to improve policies that increase access to diagnosis, treatment, rehabilitation, and social support.
Subsidized Medication and Improved Care
Ayush, you have been involved in advocacy for subsidized medications and improved care access. What has already changed, and what still needs to happen?
Dr. Ayush Chandra:
There has been progress.
Awareness has increased among both MS patients and healthcare providers. MS has been gradually recognized as a public health concern and a chronic condition.
When the WHO included rituximab in the essential medicine list, we started advocating for its inclusion and subsidy in Nepal as well. We have met with the Ministry of Health and Population, and we have also advocated for people with MS to be included in Nepal’s disability categories.
If MS is recognized under disability support, patients may gain access to government benefits and social support.
But there is still much to do. We are still a young organization, and Nepal still needs more structured support for MS care.
Building Better MS Care
From a global MS community perspective, what can other countries learn from Nepal’s experience of delivering comprehensive care despite resource constraints?
Dr. Ayush Chandra:
The first challenge is limited resources. The second is the need for education.
We need to educate people that MS exists in this part of the world. We need to teach patients, families, healthcare workers, and communities why early diagnosis and treatment are important.
We are also focusing on telemedicine. This can help people in rural areas connect with doctors and receive care earlier.
Dr. Avinash Chandra:
The most important thing is to look for solutions even when resources are limited.
For example, if larger organizations could help make some medications generic, that would increase availability and reduce cost. Global organizations could also allocate quotas or subsidies for countries where paying capacity is low.
Another important point is local research. We often rely on studies from the Western world. But in our own country, we have different challenges. We need collaborative studies and local data to understand what works best in Nepal.
Outlook
Avinash, which development in MS diagnosis and treatment in Nepal would you like to see in the coming five years?
Dr. Avinash Chandra:
I would like to see several things.
I want more treatment options. I want more affordable medication. I want support from organizations like WHO or MSIF for lower-income countries.
I would also like to see stronger collaboration and research. We need studies that reflect our own population and our own challenges.
We are not a rich country, but we can have innovative ideas. Sometimes a smaller budget can still create a meaningful impact if we use it well.
Message to People Living with MS and Their Families
Ayush, what would you like to share with people living with MS and their families, especially those who feel alone or overwhelmed?
Dr. Ayush Chandra:
I would like every person living with MS and every family member supporting them to know that they are not alone.
While MS can be unpredictable and challenging, many people continue to lead meaningful, productive, and fulfilling lives with the right care and support.
It is important to seek medical guidance, stay informed, and remain connected with support networks. Do not hesitate to ask questions, seek help, and advocate for your needs.
Avinash, what is your message to families supporting someone with MS?
Dr. Avinash Chandra:
To families, my message is that your support plays an extraordinary role.
Your understanding, patience, and encouragement can make a tremendous difference. As a community, as families, and as healthcare providers, we must continue working together to build a future where every person with MS in Nepal, in the global community, and in lower-resource countries has access to timely diagnosis, effective treatment, rehabilitation, and hope.
The journey may be difficult, but no one should have to walk it alone.
Closing
Nele von Horsten:
Thank you so much to both of you for giving us this inside view.
Thank you for everything you are doing for your community locally. Hopefully, this podcast helps raise awareness, within the MS community worldwide and also among organizations such as MSIF, so that improved care can reach people in Nepal and in other countries with financial restrictions.
Thank you so much.
Dr. Avinash Chandra:
Thank you, Nele, for having us.
Dr. Ayush Chandra:
Thank you, Nele. We will stay in touch.
On LinkedIn
See you soon and try to make the best out of your life,
Nele
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