The pandemic has fundamentally changed how we work, learn, and communicate. In developed countries, people have pivoted to working and learning online and instituting new safety protocols to protect themselves and loved ones. Imagine for a moment how difficult our new reality would be if you had no stable internet access? Or how parents would cope with traveling four hours on a crowded bus to secure factor for their children? When the pandemic first hit, the World Federation of Hemophilia (WFH) was concerned that as national healthcare systems moved to meet the challenges brought on by COVID-19, the gap in access to treatment could increase. We moved quickly to mitigate this in the early days of the pandemic—to ensure that critical programs and donated factor deliveries would not be affected and that our community would continue to receive accurate, up to date information.
The WFH also reached out to our national member organizations (NMOs) to find out how they were coping. Their responses revealed a gap that extended beyond treatment and impacted other aspects of their work and lives. At the NMO level, many lacked the tools to access WFH webinars and workshops and could not reliably reach their community to offer support. Patient families lacked access to the internet, and the long public transportation rides to urban-based hemophilia treatment centres (HTCs) became unsafe as the pandemic took grip. The lack of access to healthcare professionals and community isolation were clearly taking a toll on the community.