April 17 marked World Hemophilia Day—a day that brings the global bleeding disorders community together. The theme this year was “Adapting to change: sustaining care in a new world”. With the COVID-19 pandemic presenting challenges to societies across the globe, how has the bleeding disorder community responded this past year? Some answers are provided by the World Federation for Hemophilia (WFH) Humanitarian Aid Program in its Impact Report 2020, published on April 14.

The WFH Humanitarian Aid Program was started in 1996 to provide predictable supplies of drugs to treatment centres in low-income and middle-income countries (LMICs) and ensure reliable access to treatment for patients with bleeding disoders. It also educates physicians on identification and management of patients. In some LMICs, treatment centres often rely on donated clotting factor distributed by the Program.

In 2020, losses in income from reductions in private finance, domestic revenue, and international trade in LMICs, as well as lockdown restrictions, are driving more people into extreme poverty, making humanitarian aid in general even more important. However, travel bans, partial or full lockdowns, and border closures have affected delivery of aid and the availability of personnel to distribute it, and organisations have also withdrawn personnel owing to perceived exposure risk.

The WFH Humanitarian Aid Program has not been immune to these issues faced by aid programmes. In 2019, the Program delivered 241 million IUs of factor donations to 73 countries, resulting in 119 658 infusions for the treatment of acute bleeds. Although the number of patients treated with donated factor was similar in 2020 to that in 2019, the number of delivered donations fell to 146 million IUs, and patients received fewer infusions (19 658 infusions were done in 69 countries in 2020).

However, 2020 was not without its successes for the WFH Humanitarian Aid Program. First, to avoid as much disruption as possible, WFH collaborated with local organisations to ensure that treatment for many patients was not interrupted. Such collaborations have been something of a trend among aid organisations, and can be beneficial, resulting in more investment in grassroots organisations and in the people it is supposed to help, as well as reinforcing the importance of collaborative efforts. Second, given that face-to-face education and training has not been possible, learning delivery was moved to online webinars to ensure that education would not be interrupted; through these webinars, WFH was able to reach 1205 physicians. Finally, in the spring of 2020, the very first shipments of emicizumab distributed by the Program were delivered to patients, and 27 000 vials of emicizumab have been distributed thus far.

Needless to say, high-income countries (HICs) have not gone unaffected. Redirection of resources towards the pandemic and measures aimed at reducing infection risk have limited access to in-person care at treatment centres. Although home delivery of clotting factor for self-infusion is standard practice in some HICs, in others, people with bleeding disorders must visit pharmacies or treatment centres to pick it up. On April 16, 2020, the European Haemophilia Consortium and the European Association for Haemophilia and Allied Disorders called on European governments to adopt home delivery so that people with bleeding disorders could be assured continuity of treatment and were not put at risk. Treatment centres also provide consultations, treatment monitoring, and specific treatments and have had to quickly adapt to prevent disruption to these services. Although some might consider it no replacement for face-to-face care, telemedicine has been embraced to ensure contact with patients in some countries. This use of telemedicine for consultations and treatment monitoring not only assures continuity of care for the patient, it also reduces the burden on services that can be run, ensuring they remain available to the patients most in need. For less connected regions of the world, where telemedicine might not be feasible, bleeding disorder organisations are adopting other ways of reducing pressure on services, including videos teaching people how to self-infuse.

The pandemic has made it more difficult to provide care for people with bleeding disorders, particularly in countries that rely on aid. In these countries, interruption of treatment for many patients shows just how important aid is at a time when some HICs are reconsidering their commitments. However, the community has shown itself to be resilient and adaptable, engaging in advocacy and adopting new methods to ensure continuity of care. Although born of necessity, these actions could go on to benefit people with bleeding disorders in the years to come.

For more on telemedicine during the pandemic see Haemophilia 2020; 26: e230–31

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DOI: https://doi.org/10.1016/S2352-3026(21)00142-3

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