Thank you, Val!
Joe Pugliese – President & CEO of Hemophilia Alliance

I have had the privilege of being part of the hemophilia community for more than 40 years now. The absolute best part of this whole experience has been getting a chance to work with and getting to know so many wonderful people, from every part of the community.

It is hard to pick a favorite from so many. It is also hard to pick the one person who had the most profound positive impact on the lives of the bleeding disorders community. It is however easy to say that Val Bias has left the community far too soon and far better off than it would have been without him. As many of you know, Val sadly passed away on 12/30/2021. I do not remember exactly when I met Val for the first time, but I remember the last time we were together. Karen, Robin, Langston, Val, and I had a lovely dinner on the Jersey shore when they were staying at our beach house.

The 1,000 mega-watt smile and the booming laugh that seemed impossibly large for a person his size, defined the person he was: just bigger than life. After a life dedicated to this community in a variety of roles, he became the CEO of the National Hemophilia Foundation. He was a steady hand that guided NHF through some turmoil and it is a much stronger organization now. The more that Val gave, the more that the community responded. The list of his accomplishments are noted below by many who knew him so well. What I think made Val so unique was his ability to get others to see and believe in his vision for the community and convince them that they could advocate for themselves.

Val is survived by his wife of 20 years, Robin, and their beloved son, Langston, who have shared Val and supported his work and the community. While we remember Val’s enormous contributions, let’s not forget his family. Donations in Val’s memory can be made to the National AIDS Memorial.

I have asked others in the community who worked with him for years to let me share their remembrances here. Please read below.

National Hemophilia Foundation

NHF Mourns the Loss of Longtime CEO, Val Bias

Dec. 31, 2021 – New York, NY – NHF is deeply saddened to announce that former NHF CEO and community member, Val Bias, passed away suddenly on Thursday, Dec. 30.

NHF will forever honor Val’s legacy and all that he accomplished for the inheritable blood disorders community in the United States and internationally. Most remarkably, Val was a uniquely skilled community builder, building bridges, coalitions and cultivating champions for our community. Prior to his tenure as CEO of NHF, Val served as Chairman of The Board of Directors of NHF from Jan 1992 – Jan 1994. He also served in multiple capacities on the global stage working closely with the World Federation of Hemophilia, including advancing the International Twinning Program.

Val transformed the NHF chapter network unifying and strengthening our voice and impact from the statehouse to the halls of Congress. His many notable contributions included establishing the first NHF Washington Days and championing the National AIDS Memorial’s Hemophilia Circle. As CEO he led NHF into a new era of growth and service, he stabilized NHF funding and built programs to serve those who had been left behind. His lifelong commitment to families and youth was no more evident than through his commitment as a summer camp counselor and innovative summer camp programming in his service as Camp Founder and Staff Director of Camp Hemotion: Camp for Children with Bleeding Disorders. He began his career with NHF in Washington championing the passage and funding of the Rick Ray Act and working to transform the regulatory framework to ensure the tragedy of HIV/AIDS would not repeat. His impact and the effect of his forceful advocacy will long be felt, from the halls of power at the U.S. Capitol Building, to the arts and crafts room at local summer camps. “The reason NHF and the inheritable blood disorders community has come so far is because of what Val was able to accomplish,” said NHF President and CEO Len Valentino. “I had the honor to walk alongside Val both professionally and personally and can say with certainty that what he has done throughout his life inspired change. His legacy will live on forever, and he will be greatly missed.”

Mother of Ryan White, Jeanne-White Ginder said in tribute “I am most grateful to Val for including me in the hemophilia community and widening the circle to make sure everyone’s voice was heard. He made sure our losses were not forgotten, especially through his efforts to include the hemophilia community in the National AIDS Memorial Grove. Val knew the hemophilia community because he lived hemophilia alongside all of us. In spite of his own health battles and personal losses, he carried on with courage and strength that inspired us all, making him not only an accomplished leader but a role model that will never be forgotten.”

NHF and the community are heartbroken over this sudden loss. Val served as NHF’s CEO for over a decade and carved the path for the organization’s continued growth and sustainability. NHF extends sincere condolences to Val’s beloved son Langston, his loving wife of twenty years, Robin, and his entire family.

NHF looks to respect the Bias family’s privacy at this time and will provide further information to the community at an appropriate time. All condolences and communications may be sent to communications@hemophilia.org.

World Federation of Hemophilia

On December 30, 2021, the global bleeding disorders community lost a great leader: Val Bias, former CEO of the National Hemophilia Foundation (NHF). Yesterday, the World Federation of Hemophilia (WFH), published a condolence article. Today, three WFH leaders share their thoughts on the former NHF CEO.

“Throughout the years, I have had many chances to work with, and get to know, Val Bias. I was always very impressed by his passion, and very appreciative of his support of initiatives for Latin America. Val was someone who knew how to overcome challenges and get people working together for the greater good.”
—Cesar Garrido, WFH President

“Val Bias was a remarkable man and left a lasting impact on our community. His spirit of activism, hope and drive will live on in the many individuals he touched during his life.”
—Glenn Pierce, MD, PhD, WFH Vice President, Medical

“I got to know Val Bias during the preparation and hosting of the WFH World Congress in Orlando, Florida, U.S.A., and through many meetings with the NHF. I was impressed by his dedication, extraordinary charisma, and leadership.”
—Alain Baumann, WFH CEO

Dana Kuhn

In October 1992, there were 5 NHF men (depicted in picture) who were determined to change the NHF narrative. The picture depicts Jonathan Botello, Dana Kuhn, Val Bias, Rich David, and Donald Colburn. At the peak of growing concern with HIV infection among men with hemophilia, the Women’s Outreach Network of the NHF was created to educate women to protect themselves from infection. Through similar life experiences, Val and I decided we needed to create a men’s advocacy group. The pandemic of HIV called for a change in narrative of the national organization. The 5 men realized it was their responsibility to teach men with HIV how to protect women or their partners from HIV infection and empower men to educate others to become leaders in their communities.

These 5 men convinced NHF to create the Men’s Advocacy Network of the NHF (MANN), which brought altering changes to NHF. The change was training and placing men with Hemophilia in places of leadership. As a result, Val became the Chairman of the Board of Directors of the NHF, and Glenn Pierce became the President of NHF. Many of us became directors on the NHF Board. Under new leadership NHF began to work through their decisions and responsibilities of the HIV pandemic. With the leadership of Val Bias, positive change was made. The community was unified to work on the Ricky Ray Hemophilia Relief Fund Act of 1995. New, improved, and safer hemophilia products were coaxed into coming to market. The safety of the Nation’s blood supply became a priority especially through blood/plasma collection processes. Government agencies and Cabinet level committees accepted hemophilia consumer members to these positions turning a listening ear to their concerns and perspectives. NHF created initiatives under Val Bias and Donald Colburn challenging the raising of funds for research in gene therapy for a CURE. Under Val’s leadership “Chapter Development” was made a priority and programs were implemented. Chapters became stronger and more universally developed. I could go on with much more.

How can I impress upon the bleeding disorders community the passion and compassion this leader had for his community and the awesome change he facilitated coming out of NHF’s challenges with the HIV pandemic? We need to honor this leader and the work he accomplished to help make this community better. The NHF Board and leadership, the Chapters, Youth Leadership Programs, Cure for the Disease programs, educational programs, relationships with donors would not be where they are today without his leadership.

Lastly, the second picture depicts our friendship over 30 years. Through similar tragic experiences we were drawn to friendship. No matter the different paths our lives led us, we never lost our friendship and finding times to talk about our goals and passions for the bleeding disorders community. I encourage those who read this to express your appreciation for his leadership which created positive change for you and your family. As I look at this picture, I am the only one living. These other leaders and heroes of the bleeding disorders community lived their lives and gave their lives for the changes and benefits we experience in our everyday lives. I will be forever grateful.

Dr. Marion Koerper

As a child living in New York state Val was diagnosed with severe hemophilia B. As a young adult he moved to the Bay Area in Northern California to be the activities director of the Albany YMCA and became a patient of the UCSF HTC. At that time, the UCSF HTC in conjunction with the Children’s Hospital Oakland HTC and Hemophilia Foundation of Northern California (HFNC) were planning to hold the first hemophilia Summer Camp in Northern California; Camp Hemotion, and Val was the logical choice to become the program director of the camp. He served in that capacity for many years until he moved to New York City to become the CEO of the National Hemophilia Foundation (NHF). While Camp Hemotion director, he established a leadership program for the campers in which they learned leadership skills while progressing from camper to Assistant Counselor to Junior Counselor to Senior Counselor with increasing responsibilities at each level. How proud the campers were when they won their red Senior Counselor red jacket! These leadership skills could be applied to other organizations in school etc. The final proof of the success of Val’s leadership program is the fact that many of these senior counselors are now planning and running Camp Hemotion each year.

Another area of interest for Val was Blood Safety. As co-chair of the NHF Blood Safety Working Group with Dr Koerper, they made monthly trips to Washington DC to meet with the FDA to encourage them to mandate testing of all blood donations to ensure the safety of the blood supply for all Americans. Another concern of Val’s was AIDS. Having lost many of his good friends in the hemophilia community to HIV, he worked with the National AIDS Memorial Grove in Golden Gate Park in San Francisco to establish the Hemophilia Memorial Circle, which memorializes all those in the hemophilia community lost to AIDS. In addition to all these accomplishments, Val was a superb CEO of NHF, establishing research programs with the Centers for Disease Control (CDC) to promote the UNIVERSAL DATA COLLECTION (UDC) program and with a manufacturer to establish MY LIFE/OUR FUTURE, by which all hemophiliacs and many carriers could be genotyped to find the cause of their hemophilia. Many important scientific discoveries were made through these two programs.

Through all this, Val remained a kind, compassionate man, a mentor to many of the young persons he worked with at Camp Hemotion.

Val’s presence loomed large in the hemophilia community, and he will be greatly missed.

We extend our condolences to his wife Robin and son Langston.

Dr. Glenn Pierce

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. Judith Baker

Dear Western States/Region IX HTC Colleagues,

With heavy hearts we mourn the passing on December 30th, of Val Bias, visionary hemophilia leader extraordinaire – advocating to strengthen peoples’ skills and organizations’ services locally, statewide, regionally, nationally, internationally throughout his life.

Yes, Val was the CEO of the National Hemophilia Foundation from 2008 – 2019. But Val was also a treasured friend with a booming welcoming laugh. A colleague with sharp insights. And an inspiring mentor to countless kids, teens, and even adults — in California his home for many years from age 19 – and beyond. Director of Camp Hemotion, CEO of the Hemophilia Council of California, Board member and President of the Northern California Hemophilia Foundation … are just a few of the organizations in our region that grew stronger with Val’s devotion to growth and sustainability through partnership and next skill building.

Val lived with hemophilia and its complications. His work is sung by many:

• UCSF Hemophilia Treatment Center: Click here for a facebook post from Marion Koerper, MD, Founding Director.
• National Hemophilia Foundation: For NHF’s statement click here. And here for NHF’s 2019 tribute to Val.
• World Federation of Haemophilia: Click here for a condolence article, here for statements from WFH leaders, and a tribute from WFH Vice President, Medical Glenn Pierce.