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 Cedric Hermans, MD, PhD, Medical Member, Belgium.
How did you get involved with the WFH?
I was invited to participate in my first WFH congress in Montreal in 2000. At that time, I had just completed my PhD in toxicology, and had reoriented my career to hematology, and hemophilia in particular. That very first meeting opened my eyes to a fundamental aspect of hemophilia: it’s a global disease with specific and numerous challenges. Because of this, a global and unique patient organization like the WFH is needed in order to support patients globally, and help improve their lives.
What makes you proud to be part of the WFH?
As a physician and a hemophilia treater, you do your best every day to improve the life of your patients. The WFH supports this commitment in many unique ways. Although each doctor has local responsibilities, being part of the WFH and the WFH community increases your awareness about the challenges of hemophilia globally, and provides you with many opportunities to act more efficiently, locally, regionally—and globally.
What do you think is the main impact the WFH has had in recent years?
This is a difficult question to answer considering what the WFH has been able to achieve over the last decades. Clearly, the WFH has improved awareness of the bleeding disorders community, and has improved access to care for so many patients. The WFH has also helped close the gap in medical care between developed and less developed countries.
What is the main impact you hope the WFH will have in the future?
I am confident that the WFH will continue to play a critical role in improving awareness of hemophilia, and it will also continue to promote better diagnosis and access to care for patients. I also believe that the WFH will help get future innovations in hemophilia care to patients as quickly and efficiently as possible.
What do you think is one area where the WFH could improve?
I think that the organization can do even more to promote initiatives at the local level, in order to be as close as possible to patients living with hemophilia. I think this would engender a genuine feeling of affiliation with the WFH. I also believe that patients should be aware of—and support—WFH initiatives. At the same time, the WFH should continue to listen the voice of patients. Many patients are close to their national member associations (NMOs), but in my view they are not always aware of what the WFH does on their behalf. I think the WFH could do more to increase awareness of its work among patients.
Next to your involvement with the WFH Board, what is your personal involvement in the bleeding disorders community in your country or region?
Over the last two decades, I have had the major privilege of working very closely with the Belgian Hemophilia Association (AHVH). My work with the AHVH has really fueled my enthusiasm for the bleeding disorders community, and I intend to continue to work with them. More than ever, a close partnership between hemophilia treaters, other health professionals, and NMOs is critical to improve care and prepare for the future. And, of course, the relationship between all organizations should be based on trust and mutual respect.
If you had $1 million to donate to the bleeding disorders community, where would you like to see your donation go?
I would invest in new and interactive technologies that would help patients with hemophilia and their families better understand the condition, its challenges, and the different treatment options available to patients. These technologies should encourage patients with bleeding disorders to work with each other, especially in less developed countries or in remote areas. I would also support initiatives to empower patients and promote their access to treatment. In 2018, it simply isn’t acceptable that some people with bleeding disorder don’t have access to diagnosis and treatment.
To read about how other WFH leaders answered these questions, please click here.