The following is the first in a 3-part series about how NMOs in the Middle East region have responded to the coronavirus disease 2019 (COVID-19) pandemic while simultaneously pushing ahead their advocacy efforts to ensure better access to care and treatment for their local bleeding disorders communities. Their approaches reflect the unique realities of each country, in terms of capacity, public health policy and health infrastructure. The WFH applauds their resourcefulness and dedication.
The Middle East region has shown great resilience—and a great sense of community—throughout the challenges of the last months. For decades now, NMOs in the Middle East have been building partnerships with governments and medical teams, educating people with bleeding disorders and their families, and advocating for better access to treatment and home care. By leveraging this history for the COVID-19 crisis, they continue to find new ways to support their local bleeding disorder communities.
National member organizations (NMOs) and hemophilia treatment centres (HTCs) in the Middle East have now accelerated their work in order to introduce measures to serve and protect their communities during the COVID-19 crisis. They have found themselves drawing on lessons learned in better times and adapting them to their current needs. In contexts where social insurance systems are inadequate, the biggest pre-occupation for many NMOs is the economic hardship faced by people with bleeding disorders and their families because of lost jobs or lost work days. While WFH and our community continues to be committed to work towards our vision of Treatment for All, NMOs have also found it necessary to adapt to the current realities.
In Lebanon, the Ministry of Health (MoH) is offering free diagnosis and treatment of COVID-19 through government hospitals in Beirut and across the country. Donations from everyday Lebanese people have contributed to equipping specialized wards and helping to pay the fees of COVID-19 treatment for the general population. For its part, the Lebanese Association of Hemophilia (LAH) also found a concrete way to provide direct support to families of people with bleeding disorders who have been socially and economically affected by the crisis: through the provision of food and essential items to support members. LAH’s Vice President, Ali Taher, MD, provided a donation which allowed the LAH to provide vouchers to 42 families from across Lebanon who are registered with the NMO. The President of the LAH, Solange Sakr El-Hage, said, “We have a duty to keep the doors of our society open to both provide treatment and look after the well-being of our bleeding disorders community, the refugee community, and future patients.”
The Tunisian Hemophilia Association (ATH)—which works closely with all the hemophilia treatment centres (HTCs) networks in Tunis, Sousse and Sfax—had the COVID-19-related health risks of people with bleeding disorders equally close to heart. Taoufik Raissi, the President of the ATH, said, “One of the characteristics of the current health situation was solidarity and cohesion between the NMO and the community, and between the families themselves. What I would like to emphasize is the understanding we saw by health care professionals to provide factor quickly and safely.” For example, the HTC in the Aziza Othmana Hospital was at the forefront of efforts to ensure that people with bleeding disorders were well-served and protected against COVID-19 by reducing hospital visits. Emna Gouider, MD, said, “Working in partnership with the government and our NMO, our HTC followed the WFH recommendations early on to reduce hospital visits.”
In Sudan, the NMO is focussed on ensuring that people with bleeding disorders in Khartoum and other big cities are provided with factor to administer at home. Maria Satti, MD, Director of the Khartoum HTC, noted that, when managing people with bleeding disorders in remote areas, “It is extremely important to educate the patients on how to manage their bleeds at home. Because of the long distances between people’s homes and the HTC, help is not always within easy reach.” At this time of confinement and restrictions on movement, and with factor stocks projected to only last for about two months, the investment in patient education is imperative. Satti encouraged other NMOs to follow suit in order to bring as much care to as many people as possible, and for the longest possible time—during the COVID-19 crisis and beyond.