Shifting Focus: Nepal Sickle Cell 2016

Written by Monica McKeown, MD 2019

The 2016 Nepal Sickle Cell Team: Eric Busto, Jordan Yeo, Bethanie Giang, Monica McKeown, Armaan Malhotra, Abhi Cherukupalli, Katie Stromgren, and Laura Halperin.

The 2016 Nepal Sickle Cell Team: Eric Busto, Jordan Yeo, Bethanie Giang, Monica McKeown, Armaan Malhotra, Abhi Cherukupalli, Katie Stromgren, and Laura Halperin.

The one word that comes to mind when reflecting on our project this past year is “adaptable”. We went in with a concrete goal in mind: to continue the efforts of teams before us by screening members of the indigenous Tharu population in rural Nepal for sickle cell disease (SCD) – but a twist in events led us to modifying our project in a way that we never could have predicted beforehand.

A few days after arriving in Kathmandu (the capital of Nepal), we travelled to the rural province of Dang, about a 12 hour drive away. There, we met with the SCD expert in the area, who works out of the major city in the province (Nepalganj). We were able to get a much better sense of the management of sickle cell disease in the area, as well as appreciate the many challenges and barriers that patients face.

The next couple of days, we conducted qualitative interviews with patients who screened positive last year, and analyzed and organized themes that emerged from these interviews. We soon realized that while many people were screened last year (over 2,000 people), the education component of sickle cell disease was greatly lacking. People did not know how they got sickle cell disease, whether they could pass it to others, what concerning symptoms to look out for, what exactly a positive result of a screening test meant, or if there were any treatment options, for example. We heard some sad stories about children whose friends would no longer sit with them in school after they screened positive for fear of catching SCD, and about individuals who thought they were dying after a positive screen (a “screening test” is different than a “diagnostic test”, as a screening test only identifies people at increased risk of the disease – similar to the use of a mammogram to detect breast cancer). We also found that many people who screened positive last year did not have the resources to access the diagnostic electrophoresis testing, which would confirm the presence of sickle cell disease. This is because the closest testing centre is located hours away in Nepalganj, posing a significant logistic and financial challenge for patients to travel there.

The Sickle Cell Team at one of the community workshops they organized to inform teachers in rural Nepal about sickle cell disease.

The Sickle Cell Team at one of the community workshops they organized to inform teachers in rural Nepal about sickle cell disease.

We thus shifted our focus to further blood drawing for diagnostic electrophoresis testing for the 220+ people who screened positive last year (which meant transporting them all to Nepalganj!), emphasizing community education of SCD, and assisting in evaluating the screening project and be involved in making improvement changes for subsequent years. In the education component, we were able to organize and run multiple educational sessions with community members, teachers, students, and local health care workers. We were even broadcast on the local radio! We found everyone was very keen to learn. We have also funded the training of two lab technicians in Dang in proper use of the SCD screening test, and trained them on how to properly educate individuals who do screen positive. Finally, we have funded the salary of a genetic counsellor for Dang, which will greatly assist in family planning for individuals who do screen positive.

In the future we are hoping to brainstorm ideas in order to make the diagnostic testing more accessible for individuals, so that when further screening testing is done by subsequent UBC teams, there are resources in place to make sure individuals receive the proper education and care after a positive screen. We are now partnering with the Nepal Sickle Cell Society, which is exciting for future iterations of the project!

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