Val and I first got to know one another 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, from the Board, 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, he became Chair of the Board and I became the President. Together, with many others we recruited, we changed the NHF to an organization that needed to be accountable and lead on HIV/AIDS advocacy. Val subsequently went to Washington DC where he led the charge to get the Ricky Ray bill passed, and then worked on making industry accountable. While the financial accountability was important, the highest priority was to understand how this iatrogenic genocide materialized, and what must 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 is a legacy that endures today.
Val went on to advocate for many of the health and financial issues facing the bleeding disorders community, and our paths crossed often, nationally and internationally. In 2008, he was selected to lead the NHF as CEO and for over 10 years, took our organization to new levels of programming and service to the community. It was a far cry from the organization he and I led in 1992, and now grew and thrived under his leadership. He absolutely loved his job representing his community on many stages within the healthcare, advocacy and political ecosystems.
While Val retired from NHF a couple of years ago, his health began to catch up to him, as it has for all fighting the good fight beginning in the decades before HIV distributed its poison. It isn’t easy living with severe hemophilia, 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 Val’s 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- within the bleeding disorders community, but the activism, hope and drive he stood for is preserved within the many individuals Val touched along the way.
Dr. Glenn Pierce served on NHF’s board from 1984-2002, and as president 1992-94 and again in 2002. He is currently on MASAC and has served multiple terms since the 1990s. He is currently VP Medical for the World Federation of Hemophilia. Glenn received an MD and PhD in immunology from Case Western Reserve University in Cleveland, Ohio and did his postgraduate training in pathology and hematology research at Washington University in St. Louis, Missouri. He has worked in biotech his entire career, including on the development of a number of new products for bleeding disorders.