The paradigm shift that has occurred through the expansion of the WFH Humanitarian Aid Program has resulted in significant improvements in the lives of those living with bleeding disorders in developing countries throughout the world. This is as a direct result of the significant level of donations committed by Bioverativ and Sobi, 500 million international units (IU) of clotting factor concentrates (CFC) treatment products, over 5 years, along with their substantial financial support for the operational needs of this program.
The WFH Humanitarian Aid Program was established in 1996, with more than 462 million IUs of treatment products channelled since it began, to more than 100,000 people in need, in 90 countries. Prior to the expansion of this program, donations were sporadic and existing commitments allowed for only emergency relief in dire situations.
In 2014, 21 million IUs of treatment products were channelled through the WFH Humanitarian Aid Program. In 2016, the donations rose to 122 million IUs, with this level per year to remain consistent until at least 2020. This translates into a rise from 2,119 patients treated in 2014 to over 12,300 patients reported just in 2016.The projected number of patients to be treated each year with this donation from Bioverativ and Sobi is expected to be approximately 21,000.
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.
The direct impact of this sustainable and predictable model demonstrates significant transformation within the global bleeding disorders community. Life and limb-saving surgeries have climbed from 21 in 2014, to a total of 795 in 2016. As of the end of March 2017, this number has risen to over 1000. The immediate impact on quality of life is evident for those living with debilitating effects of joint damage, or having to put off other necessary surgeries due to the lack of treatment products.
Moreover, prior to the expansion of this program, people with bleeding disorders in developing countries had no opportunity to be put on a prophylaxis treatment regime, the standard of care in most of the developed world. In 2016, 852 people were placed on prophylaxis, with an additional 129 added onto this regime so far in 2017.
Last year, the WFH and WFH USA called for action to address the need for Treatment for All through the WFH Humanitarian Aid Program. This meant not only the commitment of donated treatment products, but also the financial support to allow for this program to become operationally successful.
In addition to these donations, the WFH Humanitarian Aid Program provides a wide range of integrated clinical training programs to ensure the local infrastructure and medical expertise are available to optimize use of donated products.
The ongoing support of Bioverativ and Sobi to this program demonstrates strong leadership in providing certainty to those most in need. We continue to work with all our global partners to come together to further strengthen the success of the WFH Humanitarian Aid Program.
About the World Federation of Hemophilia
For over 50 years, the World Federation of Hemophilia (WFH), an international not-for-profit organization, has worked to improve the lives of people with hemophilia and other inherited bleeding disorders. Established in 1963, it is a global network of patient organizations in 134 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org.
WFH USA advances the global mission of the World Federation of Hemophilia in the United States.
About the WFH Humanitarian Aid Program
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 WFH national member organizations (NMOs) and from recognized hemophilia treatment centers (HTCs) around the world. An increasing number of collaborators within the global bleeding disorders community have accepted the challenge of providing a sustainable and predictable supply of donated products. Through the donation by Bioverativ and Sobi to the WFH Humanitarian Aid Program of up to 500 million IUs within five years, the Grifols eight-year commitment totaling 200 million IUs, 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 initiatives of Project WISH and Project Recovery allow for the manufacturing of clotting factor concentrates from previously discarded cryopaste which provide treatment products to countries most in need.