They Suffered for Decades — Until This Doctor Noticed Something

NEPALGUNJ, NEPAL — When Dr. Rajan Pande was a postgraduate student, he made a startling discovery. At Kathmandu’s NAMS Bir Hospital, where he worked, he noticed that a striking percentage of patients from the indigenous Tharu community had seemingly incurable body aches and jaundice. Both are symptoms of sickle cell anemia.

“There were patients who had been suffering from these chronic body aches for 10 to 20 years, but had not received proper diagnosis,” Pande says.

In 2011, Pande graduated and joined Bheri Hospital as a medical officer. Here, too, scores of patients — most of them Tharus — visited with bone and joint pain, swollen spleens and anemia. They were treated for rheumatic fever or jaundice but had not been tested for sickle cell disease. Pande suspected that sickle cell anemia was widespread in the community.

It took Pande, still a junior doctor, some time to convince authorities and patients that it was necessary to test blood samples for sickle cell anemia. Since the hospital did not have the machinery required, Pande started sending the samples to Gurugram and Lucknow, cities in northern India, in 2012. The first batch included blood samples from 39 Tharu patients from Dang, Banke and Bardiya, in western Nepal. Every sample tested positive.

A decade on, Pande’s research and awareness campaigns have led the government of Nepal to recognize sickle cell anemia as a public health crisis among the Tharu. But what Pande couldn’t predict was that the road to this recognition would be fraught with risks — and much of the opposition would come from the Tharus themselves.

A dangerous crusade for testing

Pande’s discovery came at a tumultuous moment. Nepal was on the cusp of a major territorial reorganization, which had incited fierce debate, especially among indigenous communities. The Tharus comprise the fourth-largest caste group in Nepal — 6.2% of the country’s population — and are often referred to as Bhumiputras: sons of the soil.

The Tharus wanted a separate state for themselves. Like most other indigenous communities in Nepal, they were critical of any territorial reshuffle that would divide them into small pockets, making them minorities in different states.

The conflict eventually turned violent and led to several deaths, including that of police officials and civilians. People close to Pande often advised him to be cautious, as they feared his efforts could get conflated with the larger political conflict.

They were right. Pande’s findings added fuel to the fire. Groups of Tharus angrily protested the doctor’s efforts and dismissed them as deliberate rumor-mongering. Some saw his efforts as an attempt to undermine them as weak and diseased.

Sickle cell anemia is a genetic blood disorder where red blood cells assume a crescent, sickle-like shape. These cells disintegrate in 10 to 20 days, compared to the 100 to 120 days that a normal, round red blood cell lasts. Since red blood cells carry oxygen, the lack of oxygen-carrying cells causes anemia. And since human blood vessels are not designed for these crescent-shaped cells, their passage can cause intense pain, which can last for days. Patients can suffer from joint pain, ulcers and poor vision, and they’re more vulnerable to infections. The disease is incurable, though the symptoms can be managed with medication.

Amrita Jaisi, GPJ Nepal

Dr. Rajan Pande’s attempts to spread awareness about the incidence of sickle cell anemia among the Tharu community in Nepal were met with intense protests.

In the summer of 2013, five Tharu men — lawyers, health workers and journalists among them — turned up at the office of Keshav Mainali, then a judge in Nepal’s Banke district. They wanted Pande to stop his campaign, and for the court to punish him for slandering the Tharus.

But Mainali, who had battled diabetes for years, was acquainted with Pande and familiar with his work due to his frequent visits to the local hospital. He believed that Pande’s research was credible and did not register the complaint.

Then, at around 9 p.m. one day in 2014, Pande heard loud rattling from near the window of his small flat at Bheri Hospital. He realized that stones were being pelted against the window. Pande remembers that he worried about his family, but he wasn’t scared for himself. “How stubborn I was back then,” he says with a laugh. He did not proceed to formally investigate the case because he felt it wouldn’t help his cause.

It is now widely believed that since Pande’s findings came to light just as the Tharus were demanding a separate state, his work was seen as a conspiracy by members of the community to slander them. But Pande was not about to back down.

A patient introduced Pande to a friend, Rudra Subedi, a journalist. The doctor explained the issue and sought his help to get an article published in a national newspaper. Subedi’s publication agreed to print his article on sickle cell anemia only if he pledged that he was ready to bear any physical and legal consequences of publishing the report, without any support from the newspaper’s owners.

Around the same time, a chance meeting helped turned the tide in Pande’s favor.

Going up against the government

Pande initially faced heat from the government for raising this issue. Soon after the Tharu men tried suing him, a team from the Nepal government landed at Bheri Hospital to investigate Pande’s claims. “But when I started showing them the evidence, I remember the color draining from their faces,” Pande says.

By chance, Pande met Gopal Dahit, a constituent assembly member from the Tharu community. Dahit set out to meet patients undergoing treatment for sickle cell anemia in private and government hospitals in Kailali and Banke districts. After realizing that these patients had been struggling with an undiagnosed disease for years, Dahit took Pande’s findings seriously and agreed to bring the issue up with fellow lawmakers.

In July 2014, Dahit led a discussion attended by 50 to 60 of Parliament’s 601 members. The event received a fair amount of favorable press coverage. Gradually, authorities woke up to the issue.

Dr. Prakash Budhathoki, a spokesperson for Nepal’s Ministry of Health and Population, says that the government came to trust Pande because he works as a government employee at Bheri Hospital in Nepalgunj, and several members of the Tharu community commended his work.

One of the Tharu community members who was part of the group that went to court against Pande says that they were agitated because they didn’t know much about the disease, and it felt like Pande was trying to slander them. The man, who asked not to be identified in order to avoid social repercussions, says that once they understood the importance of Pande’s work, they changed their mind. They decided to come forward to help him raise awareness.

Anil Sen Thakuri, who heads the health department of Kohalpur municipality in Banke district, remembers how people suffered from multiple complications due to the disease but couldn’t understand what was causing their pain. “He took the trouble to show us with concrete evidence how the disease spreads. He worked very hard. We came to know this exists in other countries too,” he says. “So we decided to act on his requests.”

Success at last

The government has started investing in prevention and treatment of the disease, including testing and free blood transfusions. The national government now provides people diagnosed with sickle cell anemia with one-time financial assistance of up to 100,000 Nepali rupees (750 United States dollars) for medical expenses. In 2022, the local Lumbini provincial government started providing free screenings for the genetic and blood-related disease in the Tharu community.

In 2016, the government purchased a sickle cell anemia testing machine and sent it to Nepalgunj. That same year, Pande developed a chart that showed the steps to stop the transfer of sickle cell anemia to a new generation. The chart explains that if two people have sickle cell anemia, there is a high chance that their children will inherit the disorder.

Pande distributed the chart to Tharu community members in Banke and Bardiya districts. Much later, government agencies used it for public awareness campaigns, and local governments in Banke and Bardiya still use it. An informational booklet on anemia and the blood disorder thalassemia prepared by Pande and his team has also been included in the curricula of government and private schools in two municipalities, Barbardiya and Rajapur, in Bardiya district.

Amrita Jaisi, GPJ Nepal

Following Dr. Rajan Pande’s efforts, funds have been created in some districts in Nepal to provide financial assistance to people suffering from sickle cell anemia.

“This is to create awareness to reduce the number of sickle cell disease among Tharus to zero,” says Dipesh Tharu, mayor of Rajapur.

Durga Bahadur Tharu, the former mayor of Barbardiya, introduced Pande’s booklet in school curricula in 2018. “People had not heard about it, and there were some protests against the move initially. However, with these efforts to increase awareness, people are getting tested and seeking treatment,” he says.

Deepak Kumar Chaudhary, of Dang district, had been searching for a treatment for his intense joint pain since 2006. “Some doctors said this was arthritis. Some said this was not a disease at all. I could not walk two steps properly. I could not move my hips,” he says. In 2011, an orthopedic doctor referred him to Pande.

Chaudhary, now a ward chair in Rapti rural municipality, says his symptoms improved over the years under Pande’s treatment, and he now leads a nearly normal life.

“Students come to test for the disease, and there is a greater frequency of people coming to test if they are about to get married,” Pande says. “During the protests against me, I had to counsel myself, saying I was doing a good deed that [would] lead to a good result,” he says.