Dr Ishan Adhikari nerves himself for a systematic fight against epilepsy in Nepal

Dr Ishan Adhikari is on a mission to create an ecosystem for research and treatment of epilepsy, neuromuscular, and autonomic disorders in Nepal. Will the government’s national health policies help him succeed?

Rhishav Sapkota

  • Read Time 11 min.

Kathmandu: It is a Monday evening and we’re seated at a hip, quiet Himalayan Java outlet, in the southern rim of Kathmandu Valley. Dr Ishan Adhikari, a fit, well-built physician in his 40s, turns to me with a poised smile after asking the waitress what the most popular item on the menu is. After getting an answer I missed, he asks me, “And what exactly do you want to know?”

“Well, I want to know everything there is to know about you,” I respond.

The man exudes confidence when he decides to give a quick run-through of his life, which I listen to intently, hoping to pick up on tangents.

Dr Adhikari is a clinical neurophysiologist and neurologist who specializes in epilepsy, neuromuscular and autonomic disorders. He recently moved back to Nepal—leaving behind a lucrative career and a comfortably settled life in the United States—to create an ecosystem of organizations that will work in unison to do research, testing, diagnoses, and treatments for the yet little known set of neurological disorders in Nepal. It is an initiative unprecedented and unparalleled in Nepal. Adhikari’s life may not exactly be a rags-to-riches story, but it is a compelling one of how genuine interest, hard work, and consistency lead a man to excel in a seldom-trodden field.

Adhikari was born and raised in Kathmandu in a well-to-do, educated family. His father was a political science graduate from an Ivy-league university, his grandfather a Guruju for Nepal’s Royal family. His father worked as a state advisor, mostly on political appointments, and his mother was an entrepreneur who started her own school, where Adhikari also studied for a while.

Adhikari remembers wandering around the city with his childhood friends, and thinking that because he was not “the bookworm”, success would not come in flocks for him. But for a man who is now a clinical neurophysiologist and neurologist specializing in the as-yet largely unexplored field of epilepsy, neuromuscular and autonomic disorders, life has turned out better than he thought it would.

It is also safe to say that the man has chosen his own trials for the entirety of his adult life. Once he returned to Nepal, Adhikari established his own Medharma CliniX, a clinic focused on epilepsy, neuromuscular and autonomic disorders, where he offers his specialized services, and he also works part-time at the Mediciti Hospital. Adhikari also has other ongoing projects and larger expansion plans.

After completing his medical undergraduate studies in Bangladesh, Adhikari returned to Nepal and worked as a house officer in various locations. However, a sight in the Teaching Hospital’s library halls altered his perception of what a career should entail. He couldn’t help but wonder why the throngs of “bright students” were huddling up in the halls for hours on end preparing for the United States Medical Licensing Examinations (USMLEs). With his interest piqued, he quit his steady job as a house officer and began studying full-time for the examinations. In retrospect, he attributes this decision to two major factors: a lack of intellectual stimulation in his job and a tendency to trust his gut instinct. One can’t help but wonder if his success in life is due to his faith in instincts.

Adhikari’s experience as a house officer led him to realize how inefficiently healthcare has been managed by non-medical personnel. It led him down an unorthodox path that no one he knew had taken before, but also amounted to the life of intellectual adventures he craved in his first stable job.

Adhikari’s life may not exactly be a rags-to-riches story, but it is a compelling one of how genuine interest, hard work, and consistency lead a man to excel in a seldom-trodden field.

Adhikari then applied for a Master’s degree in Healthcare Management in the United States and was awarded a full scholarship. When Hurricane Katrina hit, in 2005, he had just finished his first semester at the University of New Orleans. He was then required to transfer to Louisiana University, coming back to New Orleans after a semester. He and his wife then relocated to Houston where he got a medical assistantship in neurology. The move was more for an experience than money, Adhikari says.

Adhikari was accompanied by his now dentist wife, who was then studying to be one. Adhikari married her while studying for the USMLEs in Nepal. At this point of the conversation, I make a joke about how he got married while unemployed and how his wife must have had a lot of faith in him. He laughs at the rib-poking and says, “That’s the hard way to put it, but the right way.” He also mentions that his wife has always served as an advisor in his life, balancing his intuition with her more rational nature.

After a brief six months stay in Houston, he then went to Baylor College of Medicine as a research scientist, where he tested for autonomic disorders—a frontier in medicine yet to be adequately explored. He considers the most valuable skill he learned at Baylor to be learning how world leaders in neuromuscular and autonomic disorders think. “The great professors I had there taught me that what you know isn’t as important as how you think,” he recalls fondly. “They taught me humility, which I try to practice in my profession, especially when I talk to my students.”

Adhikari’s instincts struck him again after understanding the complexities of autonomic disorders testing techniques. He wanted to understand the pathophysiology of the rarest autonomic disorders. This led him to the New York Medical College School of Medicine for a clinical fellowship in autonomic disorders after contacting Dr Steven Vernino, vice-chair of Education and Faculty Affairs at the University of Texas, who recommended him for a clinical fellowship position at the New York Medical College School of Medicine (NYU).

Dr Adhikari with colleagues on a Clinical Fellowship Training in Autonomic Disorders at NYU School of Medicine, Dysautonomia Center
Dr Adhikari while in a Clinical Fellowship Training in Epilepsy and Neuromuscular Disorders at UT Health San Antonio, Texas

From 2009 to 2011, he spent two years in New York studying under world-renowned Professor Dr Horacio Kaufmann. He found the experience particularly difficult due to the volume of patients and the types of diagnosis and treatment required for autonomic disorders. Adhikari’s research and clinical experience at NYU led him to San Antonio where he could harness his expertise and complete his remaining training in neurology and neurophysiology (epilepsy and neuromuscular disorders). This enabled him to tuck these three domains—epilepsy, neuromuscular and autonomic disorders—under his specialty training. The icing on the cake was that the University of Texas San Antonio has one of the best dental programs in the country. His wife, Dr Anu Adhikari was also accepted into the International Dental Education program in the same university at the same time. After completing his training, Adhikari’s experience allowed him to advance to the position of Associate Professor within three years of starting as an Assistant Professor, a position most people get only after six to seven years.

His plans to help people in Nepal are motivated primarily by the satisfaction he derives from being able to make a significant difference in the lives of patients and their families here in Nepal, he says.

By that time, the couple had two children. The family settled in, friendships flourished, and careers were rewarding. The hard-fought victories were beginning to bear fruit. Why, then, would he choose to return to Nepal with his family, despite significantly lower pay and an uncertain future? Adhikari’s intuition was once again to blame, along with a dash of confidence, a reserve he has used repeatedly in his life.

Dr Adhikari with his family in the USA

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To understand why Adhikari decided to return back to Nepal, one has to understand the nature of conditions like epilepsy, neuromuscular and autonomic disorders, and the plight of the people in Nepal who suffer from it.

The World Health Organization estimates that more than 50 million people suffer from epilepsy, a medical condition that is “too often misunderstood.” Despite the fact that the condition is a neurological disorder caused by “brief disturbances in the electrical functions of the brain” manifesting itself as recurrent seizures, it is confused with being possessed by evil spirits and other superstitions, and being contagious. These misunderstandings continue to cloud the true picture. 

When patients have such illnesses, Adhikari explains that they can experience several types of seizures. When people think about seizures, the most frequent image that comes to mind is of a person’s entire body shuddering uncontrollably, which is technically known as generalized tonic clonic seizures. But, according to Adhikari, this is when the complexity begins. He points out that myoclonic seizures (brief shaking of a part of the body), atonic seizures (losing tone of the body and falling to the ground), staring episodes (seen mostly in children but also in adults) are all symptoms that people don’t usually identify as seizures.

In Nepal, seizure research is insufficient. According to Adhikari, who cites Dr Krishna C. Rajbhandari’s 2003 study ‘Epilepsy in Nepal,’ the traditional ways of treating such diseases in Nepal are mostly based on superstitions. Rajbhandari’s study, which included 300 then newly diagnosed epilepsy patients from the Chhetriya, Brahmin, Vaidya, Newar, Shudra, and Buddhist communities diagnosed in Shree Birendra Military Hospital in Kathmandu, found that superstitious therapies are common in all of them. Worshipping family gods, wearing mantra lockets, sacrificing animals, worshipping ancestors, and even violent beatings with broomsticks and iron rods were among the most common pseudo-remedies.

He references a study published in the International League Against Epilepsy’s journal Epilepsia in 2017 titled “Epilepsy in Asia: Disease burden, management hurdles, and difficulties.” According to the study, epilepsy patients abound in the Nepali population. Epilepsy affects at least 7 out of every 1000 Nepalis.

“Epilepsy is caused by a multitude of things,” he explains, citing the findings, “including traumatic brain injuries, prenatal traumas, strokes, and, more interestingly, central nervous system infections caused by neurocysticercosis, a preventable condition caused by swine tapeworm larval cysts.” To add to the misery, this preventable parasitic infection causes 47 percent of epilepsy cases in Nepal. The treatment gap in Nepal is likewise unacceptable, with more than 70 out of 100 patients being untreated. “However, because such illnesses are still underdiagnosed in Nepal, we can’t be confident in the treatment gap number,” Adhikari says.

Adhikari and his team members, Dr Gaurab Nepal and Dr Bharat Khatri, among others, conducted their own study among 127 health care professionals in district hospitals and primary healthcare centers after being dissatisfied with local statistics on epilepsy in Nepal. According to the survey, the majority of patients seek care for generalized tonic clonic seizures (full-body convulsions), if not two or more symptoms. Similarly, the afflicted demographic is dominated by those aged 10 to 40. Almost 80% of the instances of epilepsy were found to be caused by traumatic head traumas. However, the signs and symptoms of such illnesses go far beyond convulsions and tremors. Bipolar illnesses, sadness and anxiety, as well as alcohol and substance misuse, are all related symptoms.

The government provides subsidized medication in these circumstances, but Adhikari claims that the medications provided are insufficient. According to WHO, more than 80% of epileptics live in “low or middle-income countries,” such as Nepal. It also claims that with medical treatment that costs less than $5 per year, 70% of people with epilepsy can be “seizure free”. 

“We’re sitting between the two biggest pharmaceutical industries in the world and there is no justifiable reason whatsoever that we should be deprived of the medicines we need,” Adhikari says, pointing to yet another hurdle that comes with trying to bring subsidized medicines from these markets. “Regulatory bodies like the Drug Development Administration must consistently check the quality of these imported medications to assure that substandard medications aren’t prescribed to patients,” he says.

Adhikari brings up another figure calculated by WHO that says at least 1% of a country’s population has epilepsy (diagnosed or undiagnosed), which translates to 300,000 patients in Nepal. His plans to help people in Nepal are motivated primarily by the satisfaction he derives from being able to make a significant difference in the lives of patients and their families here in Nepal, he says. “In the short time I’ve been working in Nepal, I’ve realized that small changes that optimize the treatment that people get here can bring enormous changes in recovery,” he says. His optimism pervades his other plans to establish Nepal as a South Asian epileptic treatment center serving people in the region. “The other reason that I want to focus on epilepsy is the sheer amount of patients that we have in Nepal and the stigma associated with it, which I’m confident can be controlled with proper treatment,” he says.

Adhikari does not deny the importance of the work done by Nepali neurologists in the field. However, his vision extends to the creation of an ecosystem of layered organizations that can collaborate with one another to effectively deal with neurological disorders by channeling their resources.

Adhikari founded the Nepali League Against Epilepsy (NLAE) after discovering that the problems associated with epilepsy are caused, in the first place, by a lack of knowledge and diagnosis. He envisioned the forum as a safe and secure environment in which epilepsy patients and doctors could ask specialists direct questions about the condition. People who are interested can ask questions in League’s private Facebook group without worrying about their privacy being invaded. “The alliance has been getting very encouraging responses from patients of all backgrounds,” he says.

He established the Global Nepali Health and Research Center (GNHRC) to address the paucity of research on the epileptic population in Nepal. The research center is currently preparing a paper based on 127 responses from healthcare professionals working in district hospitals, primary care clinics, and rural health clinics. One of the intriguing findings of previous research on epileptic patients in Nepal is that the majority of cases of epilepsy have been caused by neurocysticercosis, the parasitic infection previously discussed. “The paper also intends to address the accuracy of these figures because we suspect that epileptic cases with other causes have been under-diagnosed,” he says. “We believe this paper will be a landmark in epilepsy research in Nepal.”

The research center recently signed a Memorandum of Understanding with the University of Texas Southwestern that will allow doctors who have completed their residencies in Nepal to study at the latter institution—all expenses covered. The research center has also partnered with the University of Newcastle in the United Kingdom, which will assist the center in providing training programs to medical professionals to treat and manage complex neuromuscular disorders.

He is currently registering another organization—the Muscular Dystrophy Association of Nepal (MDAN). Talks are underway between the University and the GNHRC and MDAN to collaborate on treating and managing complex neuromuscular disorders which also includes genetic material testing. The complexities now lie in navigating guidelines and borders in order to send genetic material for testing from Nepal to University of Newcastle. “We believe that this will greatly assist in research here in Nepal as well as in developing the manpower that we currently desperately require,” he says, earnestly.

His clinic, Medharma CliniX, then works as a station to treat all kinds of epilepsy, neuromuscular and autonomic disorders where he looks forward to working with his dentist wife on treating their patients. 

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Our conversation then steers toward the patient-doctor relationship which is part and partial of virtually all medical practices. He has his own opinions on it, too. “It is high time we introduce a time-based fee schedule across all fields.” His argument goes against the traditional practices that are prevalent in Nepal’s medical field. He reasons that a rigid fee schedule actually hampers the treatment that patients get. As medical professionals, he says, are all taught the necessity in being thorough when recording patient history. “But doctors aren’t isolated from the corporate environment that hospitals operate in,” he adds. “They are in this paradoxical dilemma of keeping up with the patients’ count from management while ensuring that the diagnoses and treatments they offer are scrutinous and thorough.”

A rigid one-time fee, he reasons, works against the needs of the patients, which invites other implications such as repetitive-but-redundant testings and multiple visits. “The status quo eventually burdens the patients more because this equates to them paying more than they ideally should,” he says. “This ends up affecting the entire families of patients in money and worry because they are forced to alternate between different hospitals when they don’t get the treatment they need and are satisfied with.” Instead, he reasons, patients should be able to get exhaustive treatments from fewer and more specialized places. “However, a time-based fee schedule should be totally transparent and regulated properly by regulators.”

Adhikari does not deny the importance of the work done by Nepali neurologists in the field. However, his vision extends to the creation of an ecosystem of layered organizations that can collaborate with one another to effectively deal with neurological disorders by channeling their resources. Is it possible that he bit off more than he can chew? “No, but it is a long-term strategy with plenty of challenges.”

For now, the man who seeks to create a proper ecosystem for the research and treatment of epilepsy, neuromuscular, and autonomic disorders in Nepal is on yet another seldom trodden journey. Will he succeed? There are many factors international and national, technical and philosophical that will work against his vision. Does he have any philosophical misgivings about it? He has a pretty succinct answer: “All I’m trying to do is do the right things without hurting anyone.”