This past May, eight UBC medical students provided education, raised awareness and supported screening and diagnosis of sickle cell disease to locals in the underserved medical community of Dang, Nepal. They worked with their local partnered NGO, Creating Possibilities Nepal, as well as school staff in the schools which they visited.
Based on data collected in 2015 by the founding UBC Sickle Cell Project, over nine per cent of people in the indigenous Tharu community in Dang, Nepal have sickle cell disease.
Sickle cell patients have a genetic mutation in a protein called hemoglobin, which causes their normally circular red blood cells to become mis-formed into the shape of a crescent moon. This crescent moon shape is also known as a sickle, hence the disease’s name.
The diseased sickle-shaped red blood cells cannot effectively deliver oxygen to the body because they get stuck in blood vessels due to their abnormal shape.
After completing the project, the medical students went their separate ways for the remaining summer months. The Ubyssey spoke with the six available members of the team post-project, via Google Hangouts.
The UBC Sickle Cell team debriefed on what they learned, what they experienced and how they helped the local population in Dang.
Fighting for healthcare access among fancy footwork
The medical students first took time to respectfully acknowledge the hospitality and enthusiastic spirit of their Nepali hosts.
“People in Nepal love to dance. They would bring out their scarves and skirts for us,” said Natasha Benson, the project fundraising coordinator and first year medical student. “And they would always want us to dance before we started our educational module.”
The dancing was fun, and brought the UBC medical students closer to the local community. Still, the differences between the two communities were apparent; the UBC Sickle Cell team was struck by their privilege in multiple ways.
The differences in transportation access and its effects on healthcare access were especially apparent. “We were the only people that were being transported by bus in the city,” said Benson.
Meanwhile, locals had to travel long distances on bikes or on foot simply to obtain a screening, which involved taking time off work, in uncertain road conditions.
Jesse Spooner, another medical student, stated that it was quite an ordeal for patients to just receive a diagnosis, making downstream care even more difficult to obtain.
The UBC medical students observed that it is not only the patients of Dang that are underserved — the local Nepali doctors also lack resources. There is a huge chain of paperwork and bureaucracy in Nepal which blocks the support that is available.
“It’s a hard situation in Nepal because, politically, it’s the first time in recent history that they’ve had a general election,” said UBC medical student Alice Liu. “A lot of the funding that comes in is lost in paperwork.”
Ideally, there would be more incentive to enforce a system that would allow the local doctors to obtain more supplies, personnel and funding.
Educating women to educate the community at large
Before the UBC Sickle Cell team set off to Nepal, they started with four goals. One of these goals was to educate the community in Nepal about the disease. They planned educational modules to accomplish this goal.
Later, the team adapted their strategy of providing educational modules to reach the population more effectively through providing training specifically to women of the community. The hope is that educated women in the community will continue the work after the team leaves by communicating their knowledge to other women, including mothers, about the disease and its effects.
The work allowed many locals to put a name to their ailments.
“We had a chance to meet two younger people who had sickle cell disease, six or eight years old, I believe,” recalled Alice Liu. “I remember that their moms were so grateful, because it meant that their kids could get blood transfusions, and treat the disease.”
Dal bhat power, 24 hour
While in Nepal, the UBC Sickle Cell team survived on dal bhat, a traditional Nepalese meal consisting of rice and lentils.
“Dal Bhat power, 24 hour,” piped Liu, referencing a popular phrase from the region. Printed t-shirts, found all over Nepal, attest to the lasting caloric power of this staple meal.
All the students concurred that the trip to Nepal was an immensely rewarding experience.
“When we had some free time, we would go into the city and see the temples,” said Spooner.
The team hopes that their work will be continued by future medical students from UBC. “Our advice to the next team,” said Benson, “is to learn how to dance.”