In the regional hospital of Thies, Senegal, about twenty families sat around a large boardroom table. Many had travelled over an hour by bus to attend this event. Mothers with their teenage sons, fathers holding their small children, all looking for the same thing; treatment for their children which has proven so hard to come by.
Each shared their experiences and each recounted how they are determined for things to change. What was exceptionally heart-breaking were the stories of their children who were not there – the ones that died in infancy from complications due to bleeding, who died before they were even diagnosed.
This gathering was the final event in a three-day visit to Senegal during which the World Federation of Hemophilia (WFH) marked the commencement of the delivery of humanitarian aid donations from global pharmaceutical companies Biogen and Sobi. Patients from the region surrounding Thies had gathered together to tell their stories and to explain what is desperately needed – diagnosis, education, and treatment.
Just prior to this visit with patients and their families, the WFH co-hosted a luncheon with Prof. Saliou Diop, WFH Board Member and Director of the National Center of Blood Transfusion in Dakar. Through testimonials by members of the bleeding disorders community, both from the patient and healthcare professional perspectives, this event highlighted the reality of hemophilia care in developing countries and the need for predictable and sustainable WFH Humanitarian Aid donations. Attendees included those leading the donation efforts to this program, along with leading representatives of inherited bleeding disorders care in Senegal.
A poignant moment during this event was the announcement by the representative of the Ministry of Health that factor replacement therapy for hemophilia was now being added onto the Essential Medicines List for Senegal. This accomplishment was due to many years of advocacy work by the national patient organization Association Sénégalaise des Hémophiles and healthcare professionals within the country such as Prof. Diop. In addition, through the many years of humanitarian aid donations from the WFH, the government was able to recognize the successful outcomes of providing factor replacement therapy. Within countries such as Senegal, the WFH Humanitarian Aid Program serves as a catalyst for the development of sustainable national care programs for the treatment of bleeding disorders, as well as becoming leverage to encourage local health authorities to invest in this necessary treatment.