Identification of new people with bleeding disorders can only occur through active outreach. Once identified, the need for diagnosis is imperative.
As outlined in the WFH publication Patient Outreach Guide for Hemophilia and Other Bleeding Disorders, identifying people with bleeding disorders through outreach is the first step in treatment and is essential for improving care. Without diagnosis, people cannot receive the treatment they need.
The WFH works with our national member organizations (NMO) around the world to expand the capacity in developing countries to achieve accurate laboratory diagnosis, train healthcare professionals, and assist in building the capacity of national patient organizations to further their outreach and identification goals.
At the same time that many patient organizations and healthcare communities are furthering their outreach, identification, and diagnosis efforts, the WFH Humanitarian Aid Program is providing treatment for those most in need.
“We have seen in the past a certain amount of hesitation on the part of healthcare professionals and patient organizations to conduct active outreach programs, as there was no available treatment in parts of the developing world for newly diagnosed patients,” said Assad Haffar, MD, WFH Director of Humanitarian Aid. “With treatment now available through the WFH Humanitarian Aid Program for those most in need in these countries, healthcare professionals and patient organizations can rely on these donations to treat new patients and conduct outreach programs with more confidence.”
Since 1996, the WFH has systematically developed the WFH Humanitarian Aid Program infrastructure necessary to deliver much-needed treatment, and it has provided expertise in program outreach and capacity building.
In 2015, Bioverativ and Sobi helped evolve the WFH Humanitarian Aid Program into a more sustainable and predictable solution. The expansion of the program has resulted in significant improvements in the lives of people with bleeding disorders in developing countries throughout the world. This is a direct result of the significant level of donations committed by Bioverativ and Sobi, along with their substantial financial support for the operational needs of the program.
From January to June 2017, 97 million IUs of treatment products were channeled through the WFH Humanitarian Aid Program, with 81 million IUs coming from the Bioverativ and Sobi donation so far this year. This is a significant achievement as a total of 144 million IUs were channeled during all of 2016.
Due to this significant increase in donations, a total of 12,927 patients were treated in just a few months between January to June 2017. This number is expected to continue to rise by the end of 2017.
An increasing number of contributors within the global bleeding disorders community have also accepted the challenge of providing a sustainable and predictable supply of donated products. The visionary contribution from Bioverativ and Sobi to the WFH Humanitarian Aid Program translates into 500 million IUs over five years (2015 to 2020). In addition, the eight-year commitment (2014 to 2021) from Grifols totaling 200 million IUs, the 10-year commitment (2009 to 2018) from CSL Behring of 22 million IUs and the three-year agreement (2017 to 2019) with Green Cross for 6 million IUs means there will be a more predictable and sustainable flow of humanitarian aid donations to the global community. What’s more, the Project WISH and Project Recovery initiatives allow for the manufacturing of clotting factor concentrates from previously discarded cryopaste which provide treatment products to the countries most in need.
All partners and stakeholders of the WFH need to look at what they can do to change how hemophilia care is provided to those most in need. This includes looking at donations of reagents, infrastructure improvements, and financial support for the healthcare development programs needed for outreach, training, and education.
To hear from those who benefit from the WFH Humanitarian Aid Program and to learn more about the importance of outreach and identification, visit treatmentforall.org.