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 Barry Flynn, Lay Member, U.K.
How did you get involved with the WFH?
I have to confess that before becoming the Chair of the U.K. Haemophilia Society in 2015, my knowledge of the WFH was limited. I met Alain Weill (President of the WFH) and Alain Baumann (CEO of the WFH) at the annual EHC conference in Serbia in 2015, and they outlined what the WFH is and what it does. I was immediately keen to become a part of the organization.
What makes you proud to be part of the WFH?
I’m proud of the fact that the WFH works hard at the global level to encourage developing countries to recognize hemophilia as a medical condition. The WFH is involved in every aspect of this process, from helping physicians diagnose the condition to facilitating the development of treatment capacity. Every time I hear of a country genuinely closing the gap between no patient care and comprehensive patient care, I feel not so much proud as relieved and satisfied.
What do you think is the main impact the WFH has had in recent years?
Through its Gap Program, to its Twinning Program, to its Humanitarian Aid Program that enables the distribution of donated product, the WFH is genuinely improving the lives of children and young adults with a bleeding disorder around the world. Not so long ago, those children and young adults were living short lives filled with pain and curtailed fulfilment—often without ever even knowing that they had a bleeding disorder.
What is the main impact you hope the WFH will have in the future?
In the future, I hope that the WFH will help with the early diagnosis of people born with a bleeding disorder, so they can receive effective treatment that will enable them to live complete lives. I also hope that the WFH can play a role in bringing the innovative products that are being developed today to the people that need them. For example, one development that may have a major impact in our field is self-treatment products that could have half-lives measured in weeks or months and only require subcutaneous injection. Self-treatment (as opposed to hospital-based treatment) has a life-transforming potential because it enables people with a bleeding disorder to become fully-contributing members of a country’s society. Also, because these products require no refrigeration, they can be easily distributed and stored, and so have a much better chance of getting to those who need it.
What do you think is one area where the WFH could improve?
There seems to be a trend now of philanthropic entrepreneurs thinking more deeply about how they can use their wealth to help make a difference in the world. Perhaps the WFH can look at encouraging those people to become more involved in improving the lives of people with bleeding disorders in their home country, or in their region.
Next to your involvement with the WFH Board, what is your personal involvement in the bleeding disorders community in your country or region?
Apart from my involvement on the WFH Board, my main personal involvement is chairing the U.K. Haemophilia Society, doing my best to improve the quality of life of people with hemophilia, VWD and other inherited bleeding disorders in the U.K.
If you had $1 million to donate to the bleeding disorders community, where would you like to see your donation go?
If I had $1 million to donate, I would put it towards communicating, educating and influencing the parents of children who may have hemophilia in developing countries where children are circumcised before any testing for a suspected or predicted bleeding disorders has been done—often with disastrous consequences. Many needless deaths might be avoided by leveraging the power of mobile phones, the Internet, and technology to build awareness in families, communities, medical facilities, schools and religious organizations.
To read about how other WFH leaders answered these questions, please click here.