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 Carlos Safadi Márquez, Lay Member, Argentina.
How did you get involved with the World Federation of Hemophilia (WFH)?
I have severe hemophilia A and at the age of 21 I decided to join the Haemophilia Foundation of Argentina Board of Administration as a volunteer. As a Board member of the WFH national member organization (NMO) in Argentina, I attended the Hemophilia World Congress in Dublin in 1996. Since our president at that time could not attend, I took his place at the WFH General Assembly. And that’s how my beautiful story with the WFH began.
From there I joined the WFH Youth Committee in 1996, and I have worked with the WFH as a volunteer since then. I have collaborated with different committees and attended every WFH World Congress since 1996. As my professional specialization is in electoral law, my work experience has given me the opportunity to work at the governmental level in some very challenging political situations in different countries. That experience has given me tools that I have used in my roles with the WFH to exercise effective advocacy in the different regions of South America.
What makes you proud to be part of the WFH?
The WFH is an organization that seeks to improve the lives of a silent minority of people who suffer from a chronic, painful, and expensive disorder that—if left untreated—can be deadly or disabling. I have met wonderful people in the WFH, from different social backgrounds, races, religions, and political positions. Despite these differences, we all have a single objective: to improve the life of people with hemophilia and other bleeding disorders.
I am proud of the values and principles that the WFH stands for: respect for diversity, honesty, and professionalism at work. Being part of an organization where 100% of everyone’s energy is focused on changing people’s lives—on changing pain through a smile—makes me feel proud.
Perhaps one of the most wonderful gifts that the WFH has given me is the gift of meeting exceptional people. There really are so many… but one person who made an impact on me personally was Line Robillard (past WFH Executive Director). To me, Line was a model leader—she taught me that volunteers are the heart of the WFH. She said that you always have to value their work because they have a direct impact how the quality of life of people with hemophilia and other bleeding disorders can be improved.
What do you think is the main impact the WFH has had in recent years?
I think the impact that the WFH has had on the global community is twofold. On one hand, when I joined the WFH in the mid-1990s, the thought that certain populations in Africa, Asia, Central Europe, or Latin America would have access to adequate treatment was almost impossible to conceive. Today that dream is slowly coming true. We are focused on our main goal which is the Treatment for All—but we are still very far away. There are places where there is no access to elemental treatments and we must be very aware of it. But we are getting a bit closer to that dream every day.
On the other hand, the WFH has been able to lead advances in improving how we care for people with bleeding disorders—not only in terms of access to factor but also in terms of overall wellbeing and quality of life.
What is the main impact you hope the WFH will have in the future?
Only those born in developing countries know the anguish that comes with not knowing with certainty if you will have access to appropriate treatment next month—this is something we need to improve. I wish that the WFH will continue to make progress in the developed world. I hope we continue to strive to attain the goal providing people with hemophilia with the care and training they need to live their lives with absolute normality. Today we can dream with a full life without limitations. This will be the impact of the WFH in the future.
What do you think is one area where the WFH could improve?
I am convinced that the key to the success of the WFH will be to continue to improve the advocacy skills of WFH NMOs. In a community like ours, advocacy is the gateway to better treatments and better spending on hemophilia and other bleeding disorders. We have come a long way in this area but there is still much to improve.
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 the president of the Hemophilia Foundation of Argentina, which for me is a great pride but also a great responsibility. Our national patient organization is the oldest hemophilia association in the world and it was one of the founders of the WFH. I was also part of the WFH Executive Committee from 2008 to 2014. During that time I worked in countries with different medical realities such as Bolivia or Chile. These experiences gave me new perspectives which have helped my work with the WFH.
If you had $1 million to donate to the bleeding disorders community, where would you like to see your donation go?
Infrastructure is a problem and we need to have access to physiotherapy treatment for all. However, I believe that education is the most precious asset that a person can have—and investing in education is the way for us to have a real impact on our community in the future. So I would invest the $1 million on leadership and advocacy training programs. If the leaders of WFH NMOs are given strong training, they will know how to best manage their resources in order to improve treatment for those with bleeding disorders.
To read about how other WFH leaders answered these questions, please click here.