Medical students head to Nepal to fight sickle cell disease

Eight first-year medical students are heading to Nepal this May to assist in the largest public health screening in the country's history.

Based on data collected in 2015 by the founding UBC Sickle Cell Project team, over nine per cent of people in the indigenous Tharu community in Dang, Nepal have sickle cell disease (SCD).

“In a normal red blood cell, you have hemoglobin which is used to carry oxygen to your various tissues and to your brain,” said Natasha Benson, the project fundraising coordinator and first-year medical student. “In a sickle cell patient, you have a genetic mutation in that hemoglobin and it doesn’t perform its duty. That causes the misformation of the red blood cells — hence, sickle cell.”

This sludging of the blood in the veins affects oxygen delivery because sickle-shaped blood cells can get stuck in blood vessels. It is a genetic disease.

“If your parents are carriers of the sickle cell gene, then you are more likely to get SCD,” said Maya Rosenkrantz, one of the eight medical students. Research shows that SCD can become prevalent in communities with malaria because the sickle cell gene gives the individual malaria resistance.

The 2017 UBC sickle cell screening team aims to raise at least $10,000, which will be applied 100 per cent to the cost of medical screening and diagnosis. Currently, they’ve raised almost $4,000 and welcome donations to support their cause.

The eight medical students involved in the project have four goals this May. One is to screen as many individuals for SCD as possible. The cost for one screening is approximately $10 and their fundraising goal of $10,000 can pay for approximately 1,000 screening tests. The other goals are to successfully diagnose and help treat individuals with SCD, educate the community in Nepal about this genetic disease, and assess needs for long-term medical care and support that can be provided by government.

“SCD has a super widespread effect in the body. It acts on everyone a little differently. Everywhere in the body that has a high need for oxygen, like liver, spleen, kidneys, brain and muscles, can experience tissue damage. It can be incredibly painful and can lead to death through heart and liver failure,” said Benson.

Episodes of severe pain crises can be debilitating. “Once you see a ‘sickle cell crisis’ — a severe pain attack — you won’t ever forget what it is,” said Rosenkrantz.

“It’s already known to be prevalent in certain populations around the world — for example, in Africa — but there isn’t very much data on its prevalence in South Asia,” said Rosenkrantz. Working off the data compiled by the 2015 team, the 2016 team focused on education. “They realized that a lot of individuals who had been screened positive didn’t know what that meant for their kids, their lives or how to deal with SCD,” said Alice Liu, another medical student on the 2017 team.

The government of Nepal has recently committed to paying for partial cost of the treatment for SCD. In serious cases, blood transfusions might be needed. In less severe cases, pain management with drugs or hydration would be able to ease an individual’s suffering.

“However, we would like to see what the barriers to treatment are. It can be unlikely for SCD-afflicted individuals to access government resources,” said Liu. The nearest hospital is two hours away from Dang. “The long-term [10-year] goal is to present this data to the Nepalese government. We would like to advocate for sickle cell screening at birth,” said Liu.

The 2017 team continues to work with local NGOs to provide this support — such organizations include Creating Possibilities and Intercultural Women’s Network, who connect UBC Sickle Cell Project with local resources and networks.

Correction: A previous version of this article incorrectly stated the nearest hospital was in Kathmandu. The Ubyssey regrets this error.