The WFH Humanitarian Aid Program improves the lack of access to care and treatment by providing much-needed support for people with inherited bleeding disorders in emerging countries. In the case of Nepal, the clear benefits of WFH Humanitarian Aid Program donations helped convince the government to start providing hemophilia treatment products. Below is the story of how the Nepal Hemophilia Society (NHS) improved care for their community by collaborating with the WFH.
The following was sent to the WFH by Barun Khakurel, Senior Vice President of the NHS. The text has been edited for clarity.
In the last several years, the Nepal Hemophilia Society (NHS) has made much progress in our objective of supporting our bleeding disorders community. This has been made possible by our staff, volunteers, and the support of our long-term project partners, particularly the World Federation of Hemophilia (WFH). They have provided us with much-needed financial resources to further support our advocacy objectives.
In 2006, the Nepal Hemophilia Society (NHS) affiliated with the National Federation of Disable Nepal (NFDN), and two years later, hemophilia was formally recognized as a disability. Since then, at least one representative from the NHS has been a board member of the NFDN. The NHS was later able to secure funding from the Ministry of Women, Children, and Social Welfare of Nepal and the District Development Committee of Kathmandu. All of this has played an important role in furthering advocacy efforts for hemophilia in the country.
In 2015, the Nepal government divided the country into seven provincial administrative divisions. This disaggregation of power and resources allowed the NHS to advocate effectively from the grassroots level.
Overall, the situation was improving for people with bleeding disorders (PWBDs) in the country—however, despite gaining recognition, hemophilia continued to be disregarded at policy levels. A breakthrough was possible when the NFDN brought a patient to the provincial government office to show them the seriousness of his condition. It’s unfortunate that this step was necessary, but it contributed to convincing the government to allocate about USD $86,000 to procure the necessary medicine for the treatment of hemophilia—marking the first major actionable policy for hemophilia at the provincial level. In 2017, the Nepalese government passed the Act Relating to Rights of Persons with Disabilities, and hemophilia was included. This major step allowed the NFDN to advocate for procurement of hemophilia medicines at the policy level.
Our work continued despite the many challenges presented by the COVID-19 pandemic, including severely limited supply of donated factor. Fortunately, thanks to hard work and the support of the WFH Humanitarian Aid Program, donated factor was still delivered to patients. During this period we were able to lobby the provincial governments to allocate financial resources for hemophilia in their annual budget.
All of these developments are major milestones for the NHS and the Nepalese bleeding disorders community. But there are still challenges that need to be addressed, particularly those concerning the accessibility of care for people in remote communities.
The WFH Humanitarian Aid Program has been very active in Nepal, helping to save lives and empower patients. In 2020, the Program donated nearly 4 million IUs of factor, and over 12.3 million IUs have been donated since 2015. To find out more about what the program does around the world, please click here.
About the WFH Humanitarian Aid Program
The WFH Humanitarian Aid Program improves the lack of access to care and treatment by providing much-needed support for people with inherited bleeding disorders in developing countries. By providing patients with a more predictable and sustainable flow of humanitarian aid donations, the WFH Humanitarian Aid Program makes it possible for patients to receive consistent and reliable access to treatment and care. None of this would be possible without the generous support of Sanofi Genzyme and Sobi, our Founding Visionary Contributors; Bayer and Roche, our Visionary Contributors; Grifols, our Leadership Contributor; and our Contributors, CSL Behring and Takeda. To learn more about the WFH Humanitarian Aid Program, visit www.treatmentforall.org.