The other point that was made clear to our delegation was that outreach and education were paramount to identifying those patients in need. Treatment products alone cannot solve this challenge. It is up to healthcare professionals,patient organizations, and volunteers to educate people in their communities to what daily life is like for people in inherited bleeding disorders. However, this often falls to already strained and resource-stretched volunteer networks.
When we look at the WFH’s strategic goal of improving access to safe and effective products through advocacy and product donations, we cannot forget the other areas that are important to those in developing countries. It is imperative as a global community that we work to improve diagnosis and access to treatment for all people with inherited bleeding disorders. The WFH will continue to help build capacity of our national member organizations (NMOs) to better serve the inherited bleeding disorders community.
In many developing countries governments do not have the resources to purchase treatment products, let alone provide basic hemophilia care. The reality for the people with hemophilia in those countries is to face life with severe disabilities or tragically shortened life expectancy.
To address the education and training for countries that have yet developed basic hemophilia care systems, the WFH launched the Cornerstone Initiative in 2013. Developing countries may be considered for a Cornerstone Initiative when they, or their regions, demonstrate initiative, motivation and potential to develop basic standards of care. In addition, the WFH has endorsed the French African Alliance for the Treatment of Hemophilia (AFATH) program which works within French-speaking sub-Saharan Africa. This program is coordinated by the French Hemophilia Society (AFH) and the ultimate aim is for these countries to join the WFH and become a WFH NMO.
Once basic care standards are established in these countries and there is the ability to work more in-depth on improving hemophilia care, countries may be considered for country programs. When a country program demonstrates the potential for establishing a national hemophilia care program that is integrated within the health system and covers all areas of hemophilia care development, it may be considered for the Global Alliance for Progress (GAP) Program. The Global Alliance for Progress (GAP) Program aims to identify an additional 50,000 people with inherited bleeding disorders by 2022, with 50 per cent of them living in the world’s poorest regions.
For WFH NMOs, we carry out our work through country-specific, global programs, and activities. This includes working with NMOs to implement national care programs to achieve sustainable comprehensive care, and targeted country development action plans. Expanding training for healthcare professionals as well as training to build capacity to achieve accurate laboratory diagnosis is achieved through training workshops. Programs such as Advocacy in Action and the WFH Twinning Program help implement NMO leadership skills training nationally, regionally and globally. This is complemented with promoting WFH NMO development in training workshops such as the WFH Global NMO Workshop.
WFH country-specific programs and healthcare development programs play an essential role in combination with the WFH Humanitarian Aid Program. The ability to identify, diagnose, train, and then treat those most in need are all part of advancing our vision of Treatment for All. As the WFH works towards improving access to safe and effective products through advocacy and product donations, the continued work through our programs will help to improve and sustain care for people with inherited bleeding disorders around the world.