Glenn Pierce is the Vice President, Medical at the World Federation of Hemophilia (WFH). On December 30, the global bleeding disorders community lost a leader when Val Bias, former CEO of the National Hemophilia Foundation (NHF), passed away. Here, Pierce shares his thoughts on his colleague and friend.
Val Bias and I first got to know each other 30 years ago, when we were opposing one another in an election for president of the National Hemophilia Foundation (US). I was fighting for HIV/AIDS advocacy from within the Board of Directors, and Val was part of a more activist group that was impatient the NHF wasn’t doing enough, fast enough. He and I came together, realized our goals were the same, and also recognized we were so much stronger together. We teamed up, and he became Chair of the Board while I became the President. Together, with many others we recruited, we evolved the NHF into an organization that was more accountable and that would take a leadership role on HIV/AIDS advocacy. Val subsequently went to Washington, DC (U.S.A) where he led the charge to get the Ricky Ray bill passed, and then worked on making the pharmaceutical industry accountable for their actions. While the financial accountability was important, the highest priority was to understand how the tainted blood scandal happened, and what needed to be done to prevent such a calamity from ever happening again. Val was at the forefront of this fight, which culminated in a report from the National Institute of Medicine on all the failures across the board that allowed HIV (and HCV) to infiltrate the blood supply. This accomplishment is a legacy that endures today.
Val went on to advocate for many of the health and financial issues facing the bleeding disorders community. Our paths crossed often, both nationally and internationally. In 2008, he was selected to lead the NHF as CEO, and, for over 10 years, took the organization to a new level of program offerings and service to the community. By the end of his tenure, the organization was vastly different from the one we had both been involved in initially. Val absolutely loved his job representing his community through the healthcare, advocacy, and political ecosystems.
When Val retired from NHF a couple of years ago, his health issues had begun catching up to him. It isn’t easy living with severe hemophilia. It’s even tougher compounded by infections and all the sequelae from uncontrolled bleeding before adequate treatment was available. But Val never let the hemophilia slow him down. In fact, it sped him up—the urgency of the fight was always clear and present in his mind and his actions.
Our hearts go out to Val’s family, who shared this remarkable man with a community that he left a lasting impact upon. I’ve lost a brother—we’ve all lost a brother—in the bleeding disorders community. His spirit of activism, hope and drive will live on in the many individuals he touched during his life.