In 2014, Honduras’ national member association (NMO), the Sociedad Hondureña de Hemofilia, and the World Federation of Hemophilia (WFH) started a joint effort to improve the lives of people with a bleeding disorder in the country through the Global Alliance for Progress (GAP) program. The NMO was well poised to leverage the help of the WFH, as it had a great relationship with a dedicated group of multidisciplinary healthcare professionals led by Armando Peña, MD, a team of volunteers led by María del Carmen Agurcia and the support of the Secretary of Health from the government.
Before GAP began, people with hemophilia (PWH) in Honduras had limited access to treatment—with minimum amounts purchased by the government—and access to care only in the capital city of Tegucigalpa.
José Padilla, a patient with severe hemophilia A from La Ceiba, a city eight hours away from Tegucigalpa, remembers being diagnosed when he was a child and traveling the long distance to the hospital on a regular basis. The long duration of the journey would often cause his condition to deteriorate rapidly over the course of the trip.
The GAP program’s emphasis on patient outreach, medical training and advocacy have helped to improve conditions in the country. One notable win was securing a commitment from the government to increase the purchase of concentrates. As a result, overall conditions for the bleeding disorder community have improved drastically since 2014. Five regions are now receiving dependable shipments of treatment products to not only treat acute bleedings, but also provide patients with home treatment.
José Padilla is now an active member of the local NMO. He coordinates the patient registry, and says, “…You need to give [people] support and respond to their needs, but also you need to have data to present an accurate picture to the government and health authorities.”
The success of a GAP is due to many factors. In Honduras, one of the key wins for the program is the greater involvement of the government, confirmed with the signature of a Memorandum of Understanding between the Ministry of Health and the WFH on September 2017. After four years of joint efforts, the NMO is recognized as a key partner for the Ministry of Health and the medical community.
María del Carmen Agurcia, a volunteer with the NMO, puts it this way: the NMO was not asking for the government to solve everything—rather, they were simply asking to be part of the solution. This shows the importance of the GAP program, and the fact that the Honduras NMO was able to develop skills and strengths that will continue to benefit the organization in the years to come. The NMO will continue the work started by the GAP program and will continue receive support from the WFH to improve their medical capabilities, execute outreach campaigns to other regions and advocate for better treatment conditions in the country.
The GAP Program is supported by funding from: Bayer, Biotest, CSL Behring, Kedrion, Pfizer, Sanofi Genzyme, Sobi and Takeda. The WFH would like to thank the World Health Organization for its support of the Program.