October 7, 2019

NHF’s 71st Bleeding Disorder Conference

I just returned from Anaheim, California, where the 71st bleeding disorder conference was held. From Thursday till Saturday night, this unique community gathered to share stories, learn from one another, hear experts speak on a variety of subjects. I’ve been attending since 1992, and I think I’ve only missed one, in a year when I gave birth to my third child. This year, however, was quite special. It marks the end of an era: NHF CEO Val Bias is stepping down as leader.

I always feel funny using the term CEO with Val, because he is more than just that title to this community. He has been a friend, camp counselor, mentor and activist. He always has a ready smile, and a demeanor that makes you feel he has all the time in the world to chat with you.

Wayne Cook congratulates Val Bias

I didn’t always perceive him that way. I first saw Val when in 1992 I attended my first NHF annual meeting in Atlanta. This was at the height of tensions between the consumer advocacy groups and pharmaceutical companies, during the HIV crisis. One group of activists even dressed as grim reapers, poured red paint on themselves to represent spilled blood, and walked among the booths at the exhibit hall, banging a drum. It was chilling, and everyone was on edge. Many pharma reps left, especially after they had received death threats. The exhibit hall became deserted.

Kim Phelan, executive director of the Coalition for Hemophilia B congratulates Val Bias

I attended one session, a town hall, where people could speak up and bring their complaints and air their views. At the head of the room was a podium and table, at which sat representatives from our community: Bill Sparrow, Rachel Warner, and a few others whose names I can’t recall. In the front row, an angry Michael Rosenberg, who had hemophilia and HIV, and who headed an advocacy group that was seeking justice for the HIV infection of factor. I didn’t know all the issues at that time but watched as Michael eventually was on his feet, yelling at the speakers on the podium, and the room erupted! The community was angry, hurt… poisoned. Children and adults had died. The tension was incredible.

Out of this pandemonium came a voice from the podium asking everyone to calm down and to sit down. It commanded the room, and everyone listened. People stopped shouting; people sat down. I was amazed and wondered, who is this guy, who can bring order to chaos and calm people with a commanding voice and apparently, reputation?

That was my very first impression of Val, a leader in a time of crisis. He has played many roles in our community, including helping to bring the Ricky Ray bill into law, which provided compensation to those with hemophilia who were infected with HIV and hepatitis C. He’s been a fighter on the front line for blood safety, and more recently, a fighter to keep access to all therapies in the face of insurance barriers.

Laurie Kelley with Val Bias

The opening night of NHF last week was a tribute to Val. A beautiful video, with testimonies from former NHF president Mark Skinner and current NHF COO Dawn Rotellini, shared his contributions for the past 11 years as CEO and his contributions to the community overall. It’s a life well lived. It always struck me that while Val too was infected with HIV and hepatitis C (his first wife died shortly after being infected by him), Val never seemed to harbor bitterness. He only sought justice.

We will miss his leadership. But we hope that he will stay visible in the community, to share his warm smile, hearty laugh, wisdom and friendship. He leaves a legacy, and very hard shoes to fill.

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