WFH Development Grant Program empowers patients in Nepal

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.”

Subash Shrestha is very grateful for the opportunity the self-infusion workshops afforded him. “Before the training, I had to be dependent on others to infuse factor,” he explained. “The nearest hospital is more than 20 kilometers away from my home. Even in the hospital or clinic not everyone knows about hemophilia or the procedure to infuse factor. I feel liberated that now I can do it myself. This is something that will be helpful for me throughout my life.”

Mansur Rain has a 14-year-old son with hemophilia. “There aren’t many healthcare professionals who know about hemophilia in my locality,” he explained. “There is one health assistant who has been helping us for a few years. He is very kind and knows exactly how to infuse factor. There are times when we had to call him late at night or early in the morning because my son had bleeds. Now that I know how to do it, we do not have to trouble him at odd hours. It has also saved us money that we had to pay for the infusions.” Before attending the workshop, he had never tried to infuse factor. “I was feeling a bit nervous,” he admits. “It took me a while to understand the procedure, but now I can do it easily.”

Tul Bahadur Sunar, a 38-year-old with hemophilia, highlights the importance of self-infusion. “You never know when you will get a bleed,” he explains. “It’s not always possible to find somebody who knows how to do it. Now I can infuse factor for myself.” Although he had tried to learn to self-infuse before, he had not been successful. This workshop gave him the time and practice that he needed to gain confidence. “When I was diagnosed with hemophilia, I was terrified,” he admits. “But to look at the positive side, I am happy that now I know how to take care of myself.”

All workshop participants the WFH had a chance to speak with shared with us that they were initially nervous to try factor infusion at first, but now feel more confident about the procedure. Patients feel that the workshop has given them the gift of freedom and independence by teaching them how to self-infuse. This in turn has given them peace of mind.

To learn more about the WFH Development Grant Program, please click here.

The WFH Development Grant Program is supported by exclusive funding from Sanofi Genzyme.