WFH NETWORK

The expansion of the WFH Humanitarian Aid Program: Transforming the lives of those most in need

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.

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Expanding the WFH Humanitarian Aid Program has been part of advancing the WFH vision of Treatment for All, through many years of strategic planning and outreach to global partners. Improving diagnosis and treatment in developing and emerging countries has been one of the highest priorities for the WFH and the recognition that humanitarian aid plays an integral role within this strategy has been paramount.  In recent years, it has become evident that there are some developing countries where, for the foreseeable future, governments do not have the financial resources to provide treatment products at the current prices for their bleeding disorders populations. The need for a sustainable and predictable humanitarian aid stream is the only chance for these groups of patients and their families to receive access to diagnosis and then treatment.

An increasing number of partners within the global bleeding disorders community have accepted this challenge and have helped provide humanitarian aid treatment for those most in need. Through the donation to the WFH by Biogen and Sobi of 500 million IUs over five years, along with the continued efforts of the Canadian Blood Services, Biotest, and Grifols with Project Recovery, and the work by the Italian National Blood Services through Project Wish, there will now be a more predictable and sustainable flow of humanitarian aid donations to the global community. In addition, CSL Behring and Grifols have signed multi-year commitments of treatment products which will contribute to the expansion of the WFH Humanitarian Aid Program.

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To ensure that the Program is sustainable and that the channel of aid is predictable, a collaborative effort is needed among companies, countries, and the global hemophilia community. With increased capacity, the development of expertise still needs to continue and outreach to those who remain undiagnosed is still a priority for the WFH. Continued investment in healthcare development programs, educational resources, training for healthcare professionals, and raising awareness are all needed to realize the vision of Treatment for All.

When the WFH delegation visited the hemophilia treatment centre in Dakar, they came across a young boy named Bachir. This young boy had started receiving treatment products donated through the WFH over five years ago. Without this treatment and care he received through the healthcare team in Dakar, Bachir would have faced many more obstacles throughout his young life. He is one of many children that will see a drastic change in how they will live their lives now that treatment will become more predictable.