The reality is that globally 1 in 1000 people have a bleeding disorder and a vast majority of these people still receive very inadequate care or no treatment at all, living in areas where there is limited access to diagnosis and treatment.
The cost of treatment products is prohibitively expensive and thus out of reach for most people with bleeding disorders in the developing world. Due to this lack of treatment, people with severe hemophilia in these countries often do not survive to adulthood. If they do survive they face a life with severe disability, isolation, and chronic pain.
The WFH is addressing this need with the expansion of the WFH Humanitarian Aid Program. The World Federation of Hemophilia (WFH) takes its role very seriously in providing global leadership to improve and sustain care for people with inherited bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and inherited platelet disorders. When we refer to the WFH’s vision of Treatment for All, this means that one day, all people with a bleeding disorder will have proper care, no matter where they live. We believe that all people with bleeding disorders deserve proper diagnosis, management, and care by a multidisciplinary team of trained specialists. In addition, the availability of safe, effective treatment products for all people with bleeding disorders is crucial.
While this vision is ambitious, it is also our responsibility to accomplish. As one of the WFH’s key strategic goals, more donated products will become available in developing countries. Through the donation by Biogen and Sobi of 500 million IUs over five years, 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, those in need will now start to receive a more efficient and effective flow of humanitarian aid donations. In addition, CSL Behring and Grifols have signed onto multi-year commitments which will contribute to the expansion of the WFH Humanitarian Aid Program. We are grateful to the many other partners who helped support the WFH Humanitarian Aid Program since 1996, providing 266 million IUs to 87 countries, helping some 90,000 people with bleeding disorders directly who are in urgent need. We call upon all WFH corporate partners to continue this leadership and look into how they can assist the WFH is continuing providing sustainable and predictable treatment for those in need.
The WFH Humanitarian Aid program incorporates a range of integrated care development training programs to ensure the local infrastructure and medical expertise are available to optimize and appropriately use donated products. With multi-year donations and a steady flow of treatment product to the WFH network, it will also be possible for people with bleeding disorders in the developing world have access to treatment for emergency situations, acute bleeds, corrective surgeries, and also prophylaxis for young children.
We can only achieve our vision of Treatment for All with support from the whole bleeding disorders community, especially those who have the ability to financially support this program. We encourage all those to help support those who may not be as fortunate to have access to care and treatment. We recognize that while this is an ambitious endeavor, it can be achieved. By supporting the WFH Humanitarian Aid Program, this will help create a substantial impact on the breadth and scope of care around the world. There will be increased capacity, the development of expertise, and in turn build the foundation of sustainability. Together, we firmly believe that we will achieve Treatment for All.