Building a winning coalition in a country to improve care for people with hemophilia and other related bleeding disorders makes all the difference – what the World Federation of Hemophilia (WFH) defines as close collaboration and cooperation amongst the Ministry of Health, medical professionals, and the WFH national member organizations.
In October, 2013 the WFH signed a memorandum of understanding with the Ministry of Social Health and Protection (MSPS) in Colombia as part of the Global Alliance for Progress Program. Since then steady progress has been made to improve care delivery in the country. At the beginning of this year a protocol of clinical management was established for people with severe hemophilia A. The MSPS and WFH are planning a national launching of the protocol later this year.
Another major achievement has been the development of a national registry for people with hemophilia and other related bleeding disorders by the MSPS. The intention is to monitor and survey data to measure how effectively care is being provided and to have the best possible outcomes in the quality of life of patients.
“As a treater I am delighted to see that as a country we are advancing in providing good and proper care for patients and have developed a national protocol and the registry,” stated Adriana Llinares, MD, pediatric hematologist in the Hospital Miseraricordia. “We are on a roll, still have much to do but have made good progress to now.”
Another milestone is the creation of a hemophilia working group within the MSPS. Colombia joins the few countries in the Americas region that have a national committee or advisory group on hemophilia and other related bleeding disorders which is fantastic. “The MSPS is committed to working with different stakeholders to improve care for these patients and there is a lot of potential to be successful,” stated Martha Mesa, MD, coordinator of orphan diseases of the MSPS.
The WFH is grateful for the support of the GAP Program from Baxter, Bayer, Biogen Idec Hemophilia, Biotest, CSL Behring, Grifols, Kedrion, Novo Nordisk, Pfizer, and SOBI.