It has only been one year since the expansion of the World Federation of Hemophilia (WFH) Humanitarian Aid Program. In that short period of time, the number of recipient countries has already increased from 58 to 63, while delivered donations reached a landmark of 100 million international units (IU), with over 6,000 people receiving much needed treatment to date. As part of their commitment to donate up to 500 million IUs over five years, shipments of clotting factor concentrates (CFC) from Biogen and Sobi have now been delivered to the areas most in need in developing countries around the world.
“With the expansion of the WFH Humanitarian Aid Program, Senegal has improved accessibility to treatment by providing surgeries for people with hemophilia, establishing a new prophylaxis program for children, and finally helping improve government involvement to ensure the sustainability of the treatment for patients,” said Saliou Diop, MD, Director of the Senegalese National Center of Blood.
The increase of CFCs channelled through the WFH Humanitarian Aid Program means that there has been a significant increase in the number of patients treated globally—from 1,425 in 2015 to more than 4,000 so far in 2016. For the first time with the program, there was also remarkable product utilization reported for prophylaxis treatment, with 897 patients and 10.2 million IUs utilized and reported to date. Product utilization has also been remarkable for surgeries, with 559 surgeries and 4.4 million IUs utilized and reported to date. Of these surgeries, 18% were lifesaving interventions and the rest were able to improve the physical functioning of the patients—with many able to walk after a lifetime confined to a wheelchair.
The lack of access to care and treatment in developing countries is an urgent and important public health challenge, as the cost of treatment is prohibitively expensive for the majority of those affected with a bleeding disorder. Due to the limited access to diagnosis and treatment in many developing countries, people with severe hemophilia in these areas often do not survive to adulthood.
Since the WFH Humanitarian Aid Program was launched in 1996 and before the expansion of the program, over 322 million IUs of CFCs have been distributed to over 90 countries, helping over 100,000 people with hemophilia. For many developing countries, product donations are often the only source of treatment product for patients with hemophilia and other bleeding disorders. The WFH receives requests, many urgent in nature, from our national member organizations (NMOs) and from recognized hemophilia treatment centres (HTCs) around the world.
An increasing number of collaborators in the global bleeding disorders community have accepted the challenge of providing a sustainable and predictable supply of donated products. Through the donation by Biogen and Sobi to the WFH Humanitarian Aid Program of up to 500 million IUs within five years, the three year commitment from Grifols for 20 million IUs per year, the three year agreement with CSL Behring for a total of 10 million IUs, and the agreement with Green Cross for 6 million IUs, there will now be a more predictable and sustainable flow of humanitarian aid donations to the global community. In addition, 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 allow for the manufacturing of clotting factor concentrates from previously discarded cryopaste which provide treatment products to countries most in need. These commitments will contribute to the further expansion of the WFH Humanitarian Aid Program.
The expansion of this program has increased the possibility of people with bleeding disorders in the developing world—including young children—having continued access to treatment for emergency situations, acute bleeds, corrective surgeries, and prophylaxis.