It has been a couple of weeks since the end of our time in Nepal, and it is safe to say that everyone on our team left feeling incredibly inspired by and grateful towards the CP staff that we worked alongside throughout the course of our FLEX project. In addition to the amazing work that they do such as SCD awareness, Hero Girls, Mothers’ Groups, and Microcredit Loan programs, CP created a heartwarming environment that left us feeling like family.
You could immediately tell that CP has earned the respect of the community and this is entirely due to the way that CP staff conduct themselves and the amazing work that they do as an organization. It was evident that CP not only care about the communities in Dang, but are also an integral part of them. This was exemplified by the way they welcomed everyone through their doors. The neighbourhood children would come by the Unako House in the evenings and play, joining in on meals and community activities. These children live on the neighbouring farms, and we were unsure whether they attend school as they were always around at the office. The fact that the children chose to come to our workplace in their free time showed us that Unako House is a place where anyone can come to feel welcomed, supported and accepted.
During our time in Nepal, we met one doctor in particular who is a huge advocate for SCD patients and agreed to deliver our educational module to the local officials in the Dang district. The presentation stressed why SCD is more prevalent in the indigenous Tharu population, the burden of disease on this population and the need for more resources to improve the quality of life of affected individuals. It was encouraging to see these local officials travel the distance they did to attend the meeting, and even more encouraging to see their positive reception of the presentation. One of the local officials took the floor after the presentation and pledged to equip the local health posts with tools they need to screen the communities in the area. The local doctor also suggested that it be a requirement for all neonates to be screened for SCD, however, realizing that policy change takes time, the officials pledged to encourage screening as early as possible in the meantime. This meeting highlighted the direction that the project should take for future teams. A big lesson we learned during our time in Nepal is that ultimately, the most sustainable change that we can effect will come as policy change at the government level. Future teams should continue putting pressure on the government and local officials to make policy changes that increase screening, diagnosis and treatment of SCD in the Tharu population. As these policy changes continue to develop, it is important to continue our educational initiatives aimed towards increasing communities’ awareness and understanding of SCD, and supporting mass screening days that encourage local communities to take initiative of their own health.
– Nepal Sickle Cell Team 2019