Over the next several months, Alain Baumann will be hosting question & answer sessions with World Federation of Hemophilia (WFH) leaders. Today we hear the thoughts and opinions of Saliou Diop, MD, Medical Member, Senegal.
How did you get involved with the World Federation of Hemophilia (WFH)?
My first contact with the WFH was in 1998, when I was a young resident in hematology and had some patients under my care who were living with hemophilia. The national patient organization in my country had contacted the WFH to get more in inherited bleeding disorders education tools. I was invited to attend the WFH 1998 World Congress in The Hague, Netherlands, in the same year, where I met the former WFH Programs Director Claudia Black. She proposed that I apply for the International Hemophilia Training Centre (IHTC) Fellowship Program in Paris.
What makes you proud to be part of the WFH?
It makes me proud that the WFH believes that patients living with bleeding disorders are part of a global community, and that our challenges and solutions have to be tackled by the community as a whole. The WFH vision of Treatment for All is very symbolic of this philosophy, and it’s the reason why the WFH uses all its resources—such as current scientific knowledge, financial resources, etc.—to improve the health of patients with bleeding disorders worldwide.
What do you think is the main impact the WFH had in recent years?
Increasing the number of identified patients living with inherited bleeding disorders worldwide and improving accessibility to treatment demonstrate the impact that the WFH has had in recent years. Recently, many developing countries considered that hemophilia was just a disease from developed countries. It’s amazing to see how the WFH has helped to totally change this perspective in just a short period of time.
What is the main impact you hope the WFH will have in the future?
I think that the WFH has to work with other stakeholders to gather more resources so that it can offer support to more countries. Also, the WFH should be part of a lobbying campaign to improve the financial accessibility of clotting factor concentrates (CFC) to those in need.
What do you think is one area where the WFH could improve?
There’s a growing need for local leadership to improve hemophilia care. The WFH has to coordinate with local organizations in order to best serve the bleeding disorders community.
Next to your involvement with the WFH Board, what is your personal involvement in the bleeding disorders community in your country or region?
I am involved with a cohort of 217 hemophilia patients at the Dakar IHTC medical facility in Senegal. I have an outpatient clinic once a week, and I also follow-up with patients if they are hospitalized in our service. I am also actively working with the Senegalese Society of Hemophilia and with the Ministry of Health to advise on how to improve hemophilia and other bleeding disorders care in my country. I also serve as the WFH regional adviser for Africa and thus, I participate on many WFH activities in the African region.
If you had $1 million to donate to the bleeding disorders community, where would you like to see your donation go?
I would use this money to set up a special program to secure the first ten years of a patient’s life by improving laboratory diagnosis (that is to say, training, equipment, and reagent). I would also provide free access to prophylaxis treatment for all new diagnosed patients.
To read about how other WFH leaders answered these questions, please click here.