Sickle-cell disease (SCD) is an inherited condition characterized by sickle or crescent-shaped red blood cells, due to an abnormality in a protein called hemoglobin. Hemoglobin is responsible for carrying oxygen in the blood and delivering it throughout the body. In people with SCD, the sickle-shaped cells can occasionally become stuck in the blood vessels, which means less oxygen delivery to parts of the body. Untreated, this can lead to pain, lack of energy, organ damage, infection, and in severe cases, death.
A simple way to test for SCD is to look at the shape of an individual’s red blood cells under a microscope. Although SCD is highly prevalent in Nepal, as a developing country with limited resources, it is difficult for people in rural areas to get access to healthcare, let alone be tested for sickle cell disease.
In the summer of 2015, a group of 12 medical students at the University of British Columbia in Vancouver, Canada travelled to the Dang District of Nepal through the Faculty of Medicine’s Global Health Initiative. The team screened approximately 2900 individuals for SCD, estimating the prevalence of sickle cell trait at approximately 9.3% of the population. Counselling and referrals for further testing were offered to those who tested positive.
In 2016, a new team of eight UBC medical students continued the project through partnership with Dr. Rajan Pande and the Sickle Cell Nepal team. Qualitative focus group interviews conducted with patients who screened positive in the 2015 iteration of the project highlighted a widespread need for further community education as well as facilitating access to diagnostic testing. In addition to addressing misconceptions about SCD transmission and treatment, the team also arranged for transportation for hundreds of patients to receive electrophoresis testing. This distinguished heterozygous sickle cell carriers from homozygous SCD-afflicted individuals. An emphasis was placed on building capacitance in the community, and thus it was also arranged for lab technicians and genetic counsellors within the community to receive SCD-specific training, allowing affected individuals to receive proper education and care for many years to come.
Continuing on with the project, the 2017 team also facilitated continued SCD screening, diagnosis, and education. To elucidate what the community thought about the process, and what their pressing health care concerns were, formal focus group and need assessment interviews were conducted in just under 200 individuals. Themes that emerged from these interviews were that there is a lack of accessibility, a misunderstanding of the cause of the disease, and that the community has many healthcare needs. In the face of these interviews, further community outreach and programs were developed. This included an interactive play to help the community learn about the diagnostic process and programs targeted specifically for mothers. Continued support to the local health posts was also looked at, and the expansion of health posts offering SCD screening is being analyzed.
The 2018 team continued the previous team’s work in delivering educational modules about SCD to mothers’ groups, and further expanded upon this component by training and supporting local female community health workers to deliver the teaching modules to their own community members. The upcoming 2019 team will continue training community healthcare workers and holding forum theatres about the SCD screening process in the hopes of further improving community awareness and understanding of the disease. The current team also hopes to help implement a data management system at the local hospital for better tracking and follow-up of patients with SCD in order to ensure that they receive continuing long-term care.
Future teams will continue to collaborate with Nepali professionals to improve the quality of life of people living with SCD, as well as screening and diagnostic practices throughout the country.
We would like to thank the incredible organizations, Creating Possibilities (CP) Nepal and Her International, for their invaluable support of our project, connecting us to local resources, and the tireless efforts of their staff members. Our project would not have been possible without you!