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 Deon York, Lay Member, New Zealand.
How did you get involved with the World Federation of Hemophilia (WFH)?
Since being diagnosed with severe hemophilia A as a child, inherited bleeding disorders have remained a part of my life. My first experience of the global bleeding disorders community was in 1998 when I attended the WFH’s Hemophilia 1998 World Congress in the Netherlands. It is fair to say that this was an eye-opening experience for me. It was not so much the plenaries, lectures, and workshops that left a lasting impression, but the stories of those who either had limited or no access to factor replacement therapy.
I remember a conversation I had with the mother of a child with hemophilia from India. She commented that my volunteering was appreciated, especially as I was not personally affected by hemophilia. When I explained to her that I did have a bleeding disorder, her eyes welled with tears. The reality for her son was a stark contrast to my reality. There were many more conversations like this.
It is these kinds of stories that serve as reminders to me of the inequities of care that exist around the world. They have motivated me to work with the WFH. I have been particularly involved with WFH for just over ten years now, and have been on the WFH Board of Directors since 2010. I continue to serve on a range of committees for the WFH and am involved with some country-specific programs.
What makes you proud to be part of the WFH?
The people I have met through the WFH are extraordinary. It has always struck me how our global community interacts. Countries that would not ordinarily communicate with one another for political or cultural reasons freely converse and exchange ideas in the bleeding disorders community. The strength of our decisions come from the diversity of our people. The diversity of people come from being part of a federation.
The people of the WFH are motivated every day by bringing treatment and care to all people with bleeding disorders. I am proud to serve an organization with this motivation. With the limited resources the WFH staff has, much is achieved.
What do you think is the main impact the WFH has had in recent years?
The WFH has been able to make an impact in many ways. In recent years, there has been a significant expansion of the WFH Humanitarian Aid Program thanks to both an increase in donations of clotting factor concentrates, and a now-predicable flow of donations for the foreseeable future. The impact of these predictable donations on the quality of life for people with bleeding disorders is starting to be seen throughout the world. Alongside this, the WFH has continued to focus on identifying people with bleeding disorders and working with emerging patient organizations to develop local advocates. The total number of WFH national member organizations currently stands at 134 and is ever-expanding.
What is the main impact you hope the WFH will have in the future?
My hope is that the gains made for people with bleeding disorders are sustained and there are opportunities for further improvements. For example, donated clotting factor concentrates certainly lead to a marked improvement in care. These donations can take a community far—but self-sufficiency can take a community even further. This is partly achieved through strong, thoughtful, and sustained advocacy.
What do you think is one area where the WFH could improve?
It is important for all leaders in the organization to develop and support an infrastructure that enables flexible decision-making and responsiveness to the members of the WFH. Flexibility and adaptability are needed to face the many challenging situations the WFH manages, and responsiveness is needed to provide much needed support to our community. We have many partners, but is the only global organization that serves all people with bleeding disorders. The global environment moves fast, and the WFH must continue to do the same.
Next to your involvement with the WFH Board, what is your personal involvement in the bleeding disorders community in your country or region?
Aside from my personal connection to hemophilia, I’ve been an elected volunteer with the Haemophilia Foundation of New Zealand since 1998, and have been president of the organisation for just over ten years now. Outside of my involvement with this community, I am employed in the health sector. I am increasingly involved with the ASEAN region, but like all members of the Board, I serve with an international focus in mind.
If you had $1 million to donate to the bleeding disorders community, where would you like to see your donation go?
Education and training for local clinical and patient communities is a priority to me. If I had $1 million to donate, this would be divided amongst the most impoverished countries through our existing country initiatives for the purpose of teaching local communities how to care for people with bleeding disorders using local resources. The WFH cannot be everywhere at once. The education and training needs are many and varied, from ensuring the effective use of clotting factor concentrates, to developing credible patient organizations.