In the whirlwind of just a few short weeks, HAE Nepal became HAEi member country #101. Its driving force is Ganesh Dahal. Global Perspectives caught up with him, and pioneering Nepalese immunologist Dr. Dharmagat Bhattarai, to hear more about the situation in the country, and what it takes to start advocacy from nothing.
Ganesh’s journey to forming HAE Nepal
Ganesh’s motivation stems from the knowledge that nobody should have to lose their life because they’re undiagnosed or lack treatment. This is personal too, with Ganesh having lost his father to undiagnosed HAE.
Ganesh’s own life with HAE began in 2010, when he experienced his first attack. In the years that followed there were other attacks, mostly abdominal but with occasional facial swellings. Ultimately, a facial swell led Ganesh to India where eventually he was diagnosed. Sadly, a diagnosis didn’t come in time for his father, but that tragic loss had a profound impact, igniting a passion in Ganesh to do something for the HAE community in Nepal.
Ganesh’s situation now is a microcosm of HAE in Nepal. The only treatments available are tranexamic acid, danazol, or fresh frozen plasma. Ganesh doesn’t medicate when he has episodes in his hands and legs. For swellings in his abdomen, face, or neck, he seeks medical help, but in the main, this is only a secondary treatment to reduce pain.
Stepping back to diagnosis, this is a pressing issue in Nepal. Ganesh is clear the main problem is doctors’ lack of awareness of HAE. Yet, there are already signs of improvement thanks to Ganesh and two committed clinicians, Dr. Dharmagat Bhattarai and Dr. Sudip ParajuliI. With HAE Nepal just starting, around 40 Nepalese doctors have been educated about HAE, including diagnosis, while a Facebook community has already attracted 20 members. A community that Ganesh believes will be more impactful together, telling us: “The ocean is made from small drops of water that flow through the rivers. They might not listen to one, but if you go in a group of 100, they will.”
If HAE Nepal seems to have hit the ground running, it’s largely due to Ganesh’s dynamism. After a successful career, he finally had the time to realize his dream of doing something for people with HAE, partly as a way of honoring his late father. After contacting the US HAEA, he found himself speaking to Fiona Wardman and Fanny Schappler, HAEi Regional Patient Advocates in Asia-Pacific. Both brought vast experience in HAE advocacy, which gave Ganesh further confidence to make HAE Nepal a reality.
But what is it that gave Ganesh the motivation right now? How would he encourage others to take that first step? He says that: “It should always come from your heart. Look at the impact that you are going to create and the value you can add to someone else’s life.” For Ganesh, there was a ‘spark within’ that told him to believe and begin telling the HAE story to doctors and government bodies. That single spark has set in motion the creation of the newest HAE advocacy organization in a matter of weeks, with huge promise in the coming months and years.
>> Visit HAE Nepal’s website to find out more about the organization
The only immunologist in Nepal
Nestled amongst the literally breathtaking Himalayas lies Nepal, home to over 30 million people and one immunologist. Dr. Dharmagat Bhattarai is that specialist, and he’s on a mission to improve the lives of people with HAE.
Dr. Bhattarai returned to Nepal in 2020 but found no specialist immunology professionals, few facilities for people living with HAE, such as testing for C1 and C4 inhibitor levels, and no effective medicines. Despite the seemingly overwhelming odds, Dr. Bhattarai has since established a center to diagnose immune deficiencies and HAE, in Kathmandu, the capital of Nepal.
In just four years, Dr. Bhattarai’s institute, Immunocare Nepal, has been able to take on some of the key tests necessary to diagnose HAE. Procedures such as genetic testing and the measurement of C1 inhibitor function are not yet available in Nepal; Dr. Bhattarai explained that patients in Nepal need to pay for these diagnostics tests to take place in India.
Dr. Bhattarai’s efforts mean that he has diagnosed 15 Nepalese patients from a standing start. Combined with a family of six who were diagnosed abroad, this means he is now aware of 21 confirmed cases of HAE in Nepal. According to Dr. Bhattarai, prevalence estimates indicate that there are likely to be hundreds of cases currently undiagnosed or misdiagnosed as allergies. He suspects HAE in around 34 cases but has only been able to confirm 15, often due to the absence of advanced testing. The stigma of the condition has also hampered diagnosis, with some family members being unwilling to be tested, even when others in the family have been diagnosed.
Despite advances in diagnosis, as Dr. Bhattarai told us, treatment is virtually non-existent. The only medicines are tranexamic acid or steroids, which, he says, are not very effective. Speaking directly about the problem facing people in resource-constrained countries, Dr. Bhattarai said, ‘Two patients have been able to buy medicines from another country and bring them home, but it’s impractical because it’s not every day you can go to another country and bring medicine home. It’s heartbreaking.’
Dr. Bhattarai is partnering with HAEi. Fiona Wardman, a Regional Patient Advocate for Nepal, traveled to the country to support patient advocacy efforts, including a successful patient gathering in Kathmandu. She has also worked with Dr. Bhattarai to advance the cause of HAE in meetings with Nepal’s Ministry of Health. Dr. Bhattarai said these meetings were impactful, “The officials were positive about the disease. We were joining hands to promise further progress. There are many difficulties and constraints as this is a resource-limited country. The focus is on common diseases, even malnutrition. But they gave a positive signal for commitment.”
Dr. Bhattarai believes all this is valuable progress. His work to date has also included many awareness-raising activities. He has been active on social media, has given interviews to television news and other media, and has lectured on HAE to Nepalese medical students. He has also formed two societies, one for patients with primary immune deficiencies, such as HAE, and the other for healthcare professionals: the Nepalese Immunology, Allergy and Pediatric Infectious Disease Society (NIAPIDS).
Dr. Bhattarai is keen to thank the many people who have helped him to date, including a Berlin clinic, which has provided invaluable support to some of his patients. He is also upbeat about the potential for diagnosing and treating HAE in Nepal. His message to anyone working in a resource-constrained country or region is: “Not to lose hope. Raising awareness can unite patients, leading to a push for better diagnosis and treatment. If we work together, there can be a change.”
With the founding of HAE Nepal and the indefatigable efforts of Dr. Bhattarai, there are reasons for genuine hope for the future. Dr. Bhattarai continues to advocate for the rights of people with HAE. He may be the only immunologist in Nepal, but he is far from alone.