Nepal Sickle Cell Disease Project

Dang District, Nepal

Dang District, Nepal

2016/2017 Team Leaders: Armaan Malhotra (armaan.alnino@gmail.com) & Abhi Cherukupalli (abhiramc03@gmail.com)
Location: Dang District, Nepal
Date & Duration of Project: 4-5 weeks in summer 2017
Number of Positions: 8
Project Website: www.ubcsicklecell.wordpress.com

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 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).  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 albumThe purpose of this project was to estimate the prevalence of SCD in the indigenous Tharu community.  With a team of Nepali health professionals, the team drew blood from more than 2900 individuals, performed blood smears, and analyzed the samples using microscopy. This was the largest health screening in Nepal’s history.  Individuals that screened positive for the trait were invited to receive information and counselling on how to manage their symptoms, what SCD was, access to healthcare, and plan for their futures.  In addition, money was raised to provide equipment and supplies for a local health post in the community and employ a lab technician for an entire year to treat and follow up with those diagnosed with SCD.Nepal is a very poverty-stricken country and the local people, especially in rural areas, have little access to health services.  Thus, managing a condition like SCD is very difficult, if not impossible, without support.  Preliminary results estimate the prevalence of the sickle cell trait to be 9.3% among the Tharu community.

Recently, the Nepali government has promised financial support (up to $1,000 US) for those diagnosed with SCD, which could save countless individuals from suffering and improve their quality of life immensely. However, access to diagnostic testing is difficult and expensive. Working with Creating Possibilities, local doctors and healthcare staff, the team helped provide diagnostic testing for almost 1/3 of patients that screened positive in 2015.

The team also 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!

After the project was complete, UBC students had a chance to tour a tertiary hospital, teach health lessons at local underserved elementary schools, paint a newly built health clinic, and even took a shot at aiding locals in some farm work! Participants learned a lot about the barriers to health care in rural communities, the strategies to build patient rapport in spite of language barriers, and the importance of cross-cultural collaboration.

Participants also went on a safari in the rainforest, visited the birthplace of Buddha and trekked in the Himalayas, among other cultural activities.

Future teams will expand education about SCD to other communities and healthcare workers in the villages. This will also include conducting post-education qualitative interviews with members of the community to assess knowledge retention 1 year after the 2016 sessions. The team will also conduct a comprehensive needs assessment to better characterize the health and socioeconomic barriers that face the community. The team will also have the opportunity to assist with further SCD screening and diagnostic testing in neighbouring communities, andproviding similar counselling and management strategies for those diagnosed. We hope that the elements of this project can be used in other rural communities across the country. Ultimately, the goal is that SCD screening will become part of routine newborn screening in Nepal.

 

 

Leave a Reply