WFH NETWORK

Alain Weill leaves lasting legacy at the WFH

The World Federation of Hemophilia (WFH) Annual Meeting of the General Assembly saw many new faces join the WFH. It also saw Alain Weill complete his second and final mandate as President of the WFH. Weill’s dedication and passion have been clearly felt through the last eight years. His leadership has played a key factor in enabling the WFH to continue to expand its impact worldwide through new and continuing endeavours.

Providing support to developing nations has always been a topic that is close to Weill’s heart. The WFH Humanitarian Aid Program was one of the first projects that he became involved with. He helped that program expand its reach significantly—including playing an instrumental role in encouraging sponsors to significantly increase donation volumes. He was also able to work with industry leaders to sign new pharmaceutical companies to the program and secure strong commitments from them in terms of both donations and financial investment. Weill also led the development of the WFH Africa Summit, a conference designed to look at the current state of the bleeding disorders community in Africa, with the goal of sharing learnings, building connections, and developing a realistic action plan for moving forward. That event is now in its third year.

The successful launch of the World Bleeding Disorders Registry (WBDR) is due in no small part to Weill’s commitment and initiative. The WBDR provides a platform for a network of hemophilia treatment centres (HTCs) around the world to collect uniform and standardized patient data and guide clinical practice. It has been enormously successful, with over 6,000 patients enrolled already. One important recent accomplishment for the endeavour: the WBDR completed a data linkage proof of concept study, where data from an HTC in the Czech Republic was directly integrated into the WBDR.

Alain Weill
When I look back at what has been accomplished by the WFH over the last eight years, I see nothing but a team effort. I would like to very humbly think that I played a role in our accomplishments, but we did it together. Everyone in the community—carers, patients, NMOs, and WFH staff—worked together as one to enact change and bring us closer to our shared goal of Treatment for All.

The ability to drive change at the governmental level is a rare skill that Weill possesses—and one that he has been able to leverage to great aplomb over the last eight years. Thanks to his leadership, the WFH has established formal collaboration with many countries’ national governments under Alain Weill’s leadership. Memoranda of understanding (MoUs) were signed with the Ministries of Health of 11 countries during his presidency, which has driven increases in national government support for bleeding disorders care programs in those countries. Most of the countries that signed the MoUs were part of the WFH GAP Program.

At the WFH 2018 World Congress, Weill gave the President’s address where he made two Calls to Action. The first Call to Action acknowledged the urgent need to develop a diagnostic device that is reliable, easy to use and affordable. The second Call to Action focused on making a commitment to increasing factor concentrate production, ensuring gene therapy is accessible to all regardless of income, and improving the accessibility and affordability of non-substitutional therapies. Both of these Calls to Action have been embraced by the industry and are being acted upon.

Alain Weill’s last act as President of the WFH was to congratulate and welcome Cesar Garrido, the newly-elect President of the WFH, taking a moment to offer him guidance on how to best represent the WFH globally. When asked to reflect on his time as President, Weill said, “When I look back at what has been accomplished by the WFH over the last eight years, I see nothing but a team effort. I would like to very humbly think that I played a role in our accomplishments, but we did it together. Everyone in the community—carers, patients, NMOs, and WFH staff—worked together as one to enact change and bring us closer to our shared goal of Treatment for All.”