The WFH Development Grant Program (DGP) was launched in 2018 to encourage new and innovative ideas and projects to support the global inherited bleeding disorders community. It provides WFH national member organizations (NMOs) with the opportunity to identify an issue or an unmet need in their country and then be empowered to address it. The WFH has supported 16 projects through the DGP to date, one of them being a project implemented by Nepal Hemophilia Society.
The Nepal Hemophilia Society received a grant from the WFH in 2018 to provide training to people with hemophilia (PWH) and their family members on how to infuse treatment product at home. As is the case with many countries, patients in Nepal do not have convenient access to treatment if they live outside of urban centres in Kathmandu. As part of the grant, workshops were held in all seven provinces—Province Number 1, Province Number 2, Province Number 5, Bagmati, Gandaki Pradesh, Karnali Pradesh, and Sudurpaschim Pradesh—in Nepal. A total of 510 PWH and their family members attended these workshops.
One WFH Development Grant Program self-infusion workshop participant, Shobha Nepal, has a 16-year-old son with hemophilia. “I was heartbroken when I first found out about his condition,” she says. “I left my job so that I could be there for him whenever he needs me. I do wish that he did not have hemophilia but now I have learned to deal with it. The Nepal Hemophilia Society has helped me to realize that I am not the only one going through this.” Following up with her a few months after the workshop, the WFH learned that she has gained confidence infusing her son. “I was scared to infuse factor in the beginning,” she admits. “I struggled to find the vein and it was very frustrating. But with time I have become more confident.”
Learning to self-infuse has truly been life-changing for workshop for participants. During the COVID-19 pandemic lockdown, patients who had learned to self-infuse were able to have factor delivered to them, instead of having to go to a hospital and risk exposure to the virus. “There was a 4-month lockdown period in Nepal imposed by the government because of the pandemic,” explained Subash Shrestha, a 26-year-old patient who attended the workshops. “Travelling was highly restricted. During that time, I suffered from a bleed in my left knee. The swelling was terrible, and it was very painful. I contacted the province chapter in order to get some factor. Luckily, they sent some vials and I was able to self-infuse. I feel fortunate that everything is better now.”