Over the next several months, Alain Baumann will be hosting a series of Question & Answer sessions with World Federation of Hemophilia (WFH) leaders. Today we hear the thoughts and opinions of Marijke van den Berg, MD, WFH Vice-President, Medical.
How did you get involved with the World Federation of Hemophilia (WFH)?
From 1992 to 2008 I was the director of the Van Creveldkliniek University Medical Centre Utrecht, the national hemophilia treatment centre in the Netherlands. During my time there, I was introduced to the WFH through some of the medical programs that the WFH was involved with at the time. Through those programs I had the opportunity to work with many people who were part of the organization. I was very impressed by the dedication of those individuals, and that’s what inspired me to become more formally involved with the organization.
What makes you proud to be part of the WFH?
I really find it very special to work with an organization that involves the whole community. The WFH isn’t just about doctors—it’s about doctors and patients working together in a very cooperative way. This can be seen at every level of the organization, right up to the board where patients can be lay members and have a direct say in the strategic direction of the WFH. This physician-patient dynamic informs many facets of the WFH and, I feel, is one of the things that makes the WFH so effective.
What do you think is the main impact the WFH has had in recent years?
I think one of the biggest impacts the WFH has had on the bleeding disorders community is the WFH Humanitarian Aid Program. This program does many things for our community—the most visible of which is distribution of donated treatment products. But the WFH Humanitarian Aid Program is about more than just that. It’s about being on the front line of development. It’s about being in direct contact with patients around the world so we can better understand what their needs are. In a way, this program is the engine that drives many of the programs the WFH does for the community.
What is the main impact you hope the WFH will have in the future?
We need to strive to live up to expectations that more patients will get proper diagnosis and treatment. This has to be done in Asia, in Africa, and in all the other places where people are not yet diagnosed and are left without any treatment.
What do you think is one area where the WFH could improve?
We are doing great work with WFH national member organizations (NMO), but I think we can do even more. We have to build up the process so that the specific needs of every country are addressed. Basically, donating treatment products is just the beginning. What we need to aim for is to give local organizations the tools—and the responsibility—to effectively lead change that will help their patients in the long term. The relationship has to be bilateral, where we can support local organizations, and they in turn can feed us with information that we can use to be better at what we do.
Next to your involvement with the WFH Board, what is your personal involvement in the bleeding disorders community in your country or region?
I’m also involved in European data-collection efforts and I was recently invited to be part of a U.S.A-based data collection project. I’m also involved with regulators regarding product safety through the European Medical Association (EMA).
I am very much in favour of improving data collection to support treatment outcomes, and also collecting data for advocacy. The WFH World Bleeding Disorders Registry (WBDR) is an important project what will support data collection in many countries where those efforts have not yet started.
If you had $1 million to donate to the bleeding disorders community, where would you like to see your donation go?
This is a very difficult to answer! There are so many things that we could do that I hesitate to give one answer. I see the hardships of patients not being able to pay for medication, so we have to work on getting prices down. But we also have to work at engaging people to build relationships between countries.