Helping to make a difference in Venezuela

Everyone affiliated with the World Federation of Hemophilia (WFH) works hard to help make a difference in the lives of those in the bleeding disorders community. While empirical proof of the success of these initiatives can be found in the pages of the WFH Annual Global Survey, it’s also nice to hear the personal stories of those who are grateful for the help we can provide.

Here are three stories of individuals living in Venezuela and how the WFH has been able to make an impact in their day to day lives.

Roddy Rojas - Severe hemophilia A
“Upon receiving this new and novel medication [clotting factor concentrates donation] I felt this way: I no longer had to wake up early every two days to receive medication, since I now only needed a weekly injection. I could also go back to activities that I was physically unable to do and that I had had to abandon. I feel that I have regained my quality of life. [I am once again] a person useful to society, my workplace, and my family… I express these thoughts as a sign of the support… [the WFH] provides for each one of us.”
Jesús A. Lozada M. - Severe hemophilia A

“The lack of treatment [options] due to the consequences of my country’s crisis [resulted in me having] to abandon my university studies, given the constant relapses that I had. As you can imagine, this also affected me psychologically, leading me to frequently feel very depressed, in addition to thinking that I was not giving according to my potential.

From the moment I started receiving [the clotting factor concentrates] donation, I’ve seen many positive changes in my life. Starting from the fact that I no longer feel any permanent pain in my body, and the bleeding in my knee and other articulations has reduced drastically, allowing me to walk better and start to lead a more normal life. This makes me feel very optimistic and I’ve [been able to] restart university.”

Luis Rojas - Severe hemophilia A

“[The impact of having hemophilia A] changed my life’s rhythm, abandon activities like salsa dancing, casino, and travel. [I also had to reduce my] daily work intensity, because the only way of not getting sick and missing work is taking care of yourself extremely well. In the past 7 months [since I started receiving the clotting factor concentrates donation], I have been able to restart activities. Thanks to a donation that the Venezuelan Association for Hemophilia received, factor that lasts longer in the blood…. [This donation] has changed my life.”

An increasing number of contributors within the global bleeding disorders community have 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 (2015-2020). In addition, the eight-year commitment (2014-2021) from Grifols totaling 200 million IUs, along with a ten-year commitment (2009-2018) from CSL Behring for a total of 22 million IUs, and the three-year agreement (2017-2019) with Green Cross for 6 million IUs, there will now be a more predictable and sustainable flow of humanitarian aid donations to the global community. In addition, the initiatives of Project WISH and Project Recovery allow for the manufacturing of clotting factor concentrates from previously discarded cryopaste which provide treatment products to countries most in need.