The World Federation of Hemophilia (WFH) Humanitarian Aid Program has had a strong positive impact on the global bleeding disorders community. The program is a critical endeavour for the WFH because lack of access to care and treatment for people affected with a bleeding disorder in developing countries is an urgent and important public health challenge. The WFH Humanitarian Aid Program is leading the effort to change this lack of access in developing countries by providing consistent and predictable access to Treatment for All.
2018 was a milestone year for the WFH Humanitarian Aid Program for many reasons. One of those reasons is the fact that—for the very first time—the WFH was able to ship donated treatment product to Kosovo. The WFH asked Elmedina Kukaj—Executive Director, and one of the founders of the Kosovo Hemophilia Foundation—to tell us about how this enormous accomplishment has helped the bleeding disorders community in her country.
When did you first start working with the WFH?
Our organization is quite new. We were established in July, 2018, one month after we had meeting with the WFH Regional Manager. We actually started working with the WFH in June. That’s when we asked for help with treatment product, which we need to treat bleeds, but also to help us begin prophylaxis therapy.
How did you work with the WFH during the process for getting factor donation?
We asked for donations because we had been without treatment product for Hemophilia A for months. Violeta Grajqevci Uka, MD, from the pediatric hematology department of the University Clinical Center of Kosovo sent a request to our Ministry of Health to get permission to receive donated treatment product. We were then granted permission to receive donated product and in March of 2019 we received our first shipment.
How have you used the donation?
We have mostly used the donated treatment product for children with hemophilia. We first made the announcement to the families of patients, then we distributed everything equally. It should be noted that for the first time in many years, we were able to give families two boxes of treatment product to take home so that if they need it for a bleed, or for prophylaxis, its right there for them.
What are you plans for future donations from the WFH?
We are still trying to convince the Ministry of Health to double the factor supply for prophylaxis. And we will still need to receive donations from the WFH to supplement our supply of factor. The lack of treatment is difficult for our patients. And when we don’t have any factor, our patients forced to take plasma which is not very effective.
About the WFH Humanitarian Aid Program
The expanded WFH Humanitarian Aid Program improves the lack of access to care and treatment by providing much-needed support for people with inherited bleeding disorders in developing countries. By providing patients with a more predictable and sustainable flow of humanitarian aid donations, the WFH Humanitarian Aid Program makes it possible for patients to receive consistent and reliable access to treatment and care. None of this would be possible without the generous support of Sanofi Genzyme and Sobi, our Founding Visionary Contributors; Bayer, our Visionary Contributor; Grifols and Roche, our Leadership Contributors; and our Contributor, CSL Behring. To learn more about the WFH Humanitarian Aid Program, visit www.treatmentforall.org.