Nepal Sickle Cell Disease Project

Dang District, Nepal

Dang District, Nepal

2017/2018 Team Leaders: Alice Liu
Location: Dang District, Nepal
Date & Duration of Project: 4-5 weeks in summer 2018
Number of Positions: 8
Project Website: www.ubcsicklecell.wordpress.com

The Nepal Sickle Cell Project is a global health initiative with a focus on public health, advocacy, and health education in rural communities in Nepal.

Situated on the opposite side of the globe, Nepal is a fascinating country full of history, diverse cultures, and spectacular landscapes.  In the summer of 2015, the first group of 12 UBC medical students traveled to the western province of Dang in rural Nepal.  Partnering with the non-profit organizations, Creating Possibilities (CP) Nepal and the Inter-Cultural Women’s Educational Network (IWEN), the team connected with local Nepali health professionals and developed a project to screen for Sickle-Cell Disease (SCD) amongst members of the Tharu community indigenous to that region.  The Tharu people are a marginalized group in Nepali society, who are predicted to have higher prevalence of Sickle Cell Disease than the rest of the Nepali population..  SCD is an inherited hemoglobinopathy that is characterized by crescent or ‘sickle’-shaped red blood cells that can block small blood vessels and impair blood flow, which results in multi-organ damage, severe pain crises, increased risk of infection, and even death if not managed appropriately.

nepal album

In the first year of the project, the preliminary estimate of sickle cell trait prevalence amongst the Tharu people in the region was found to be 9.3% through a mass-screening program. Since then, the Nepal Sickle Cell project has focused on providing educational resources and raising awareness of the supports available to the local Tharu community. Each year, fundraising efforts by the UBC teams were used to provide free sickle cell screening in the community. In the first year of the project, money was raised to provide equipment and supplies for a local health post. Subsequent teams’ fundraising has continued to support this lab by providing training and support for a local lab technician, as well as providing transportation to the nearest diagnostic centre for SCD diagnosis. Working with Creating Possibilities, local doctors and healthcare staff, the 2016 team helped provide diagnostic testing for almost 1/3 of patients that screened positive in 2015. This support has now been available for locals year-round since the summer of 2016. The 2017 team was able to continue on supporting the screening and diagnosis of SCD, and is currently looking at upgrading other local health posts in the area.

Raising awareness and educating the locals about SCD has been a primary focus of the teams as of recent. By teaching about Sickle Cell Disease, general hygiene, and infection prevention in local schools, students worked to raise public health awareness in the community. With the goal of promoting sickle cell screening amongst infants and children, students in the 2017 team created teaching modules on SCD which are regularly delivered to Mothers’ Groups in partnership with local CP workers. Information about the meaning, cause, and symptoms of SCD, how to access sickle cell screening and diagnosis, and where to receive care and counseling once diagnosed was provided through drama presentations in village centres, where up to 200 locals gathered around to watch the students and local CP workers act it all out. Education and public health will continue to be a focus of the project in the future.

Nepal is a low-income country with many social and economic problems such as political instability, poverty, corruption, low literacy rates, and gender inequality. As such, access to health services is poor, especially in rural areas where people must travel long distances to receive medical attention. In addition to providing education and raising awareness for SCD, the 2017 team conducted a comprehensive needs assessment to better characterize the health and socioeconomic barriers that face the community

The 2016 team had conducted several qualitative interviews with patients to assess knowledge retention about SCD from the year before. Based on the results of the interview, they constructed learning materials which were taught to several villagers, healthcare workers, teachers and students around the community. The information was even broadcast on the radio to the whole district! Subsequently, the 2017 team conducted focus groups to assess the past two years of the Sickle Cell project and identify gaps in knowledge and understanding amongst the community. Information from the needs assessment and focus groups held this year will be used to guide future directions for the project.

 

Fundraising from the 2017 team has supported lobbying efforts of the local government, which went through recent local elections for the first time in twenty years. Ultimately, the goal is that continued screening and diagnosis of the population, raised awareness in the community, and data from the various research components of the project will allow the local government to make SCD screening part of the routine infant screening for at-risk subpopulations in Nepal.

 

 

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