National Hemophilia Foundation

Remembering Legendary Leaders

It’s been a sad couple of years, made sadder today by blogging at the first of the new year about the loss of two incredible leaders in our global hemophilia community, one in the US and one in Pakistan, gone in as many weeks. I’ll write tonight about the loss of Val Bias, the first leader in the hemophilia community I ever met, who made a lasting impression on me.

Val Bias and Laurie Kelley at an NHF Annual Meeting

Val Bias was an icon in the US hemophilia community, an unmistakable presence with his dazzling smile and hearty laugh, who possessed charm but purpose, intelligence but an everyman, relaxed posture, a polished speaker who could also sit back and listen deeply. His goal was ultimately to channel his own pain and suffering, of which there was much, into something for the greater good. He was relentless, and successful, in that goal.

I first met Val during my first National Hemophilia Meeting in 1992. I was the mother of a 5-year-old with hemophilia who had just written my first book, Raising a Child with Hemophilia. I knew about HIV and vaguely what was happening to our community, but … not really. Wrapped up in my own non-HIV world, trying to figure out my place in the community, I watched with horror as a room full of patients, parents and advocates began to rip one another apart over what was happening in the community. People were furious at NHF for their lack of leadership, for advising patients to keep taking their medicine. A patient-led group had formed and stood up, shouting and threatening. Suddenly, one clear, commanding voice boomed: “Everyone, sit down and calm down.” I looked around to see who had this voice, this presence, this leadership. It was a handsome man on the podium, who seemed to be the only one with a rational expression and the only one not afraid. Val Bias.

Val and Laurie in 1998

He was famous already in the community for being executive director of the Hemophilia Council of California, a lobbyist for NHF in Washington DC, and president of the board of the Hemophilia Foundation of Northern California. He was an active camp counselor, mentoring the boys with hemophilia. What amazed me most about him was his role in helping get the Ricky Ray Hemophilia Relief Fund Act of 1998 passed. This act allowed monetary compensation for those infected with HIV who have hemophilia.

Later, Val became the first African-American leader of NHF and one of the first patients to become a leader in NHF. His presence was galvanizing and he made impactful structural changes, which required great risks.

The tributes and condolences are pouring in on Facebook but this one, from our mutual friend and colleague, Dana Kuhn, a particularly close friend of Val’s, hit me the most:

“The pandemic of HIV called for a change in narrative of the national organization [NHF]. [A] group of 5 men realized it was their responsibility to teach men with HIV how to protect women 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 strategically training and placing men with hemophilia in places of leadership. As a result, Val became chairman of the Board of Directors of the NHF, and Glenn Pierce became president of NHF. Many of us became directors on the NHF Board. Under new leadership the organization began to work through the decisions and responsibilities of the HIV pandemic in the hemophilia community. 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.

Val with Chris and Jess Bombardier, and Laurie Kelley, in 2019, recognizing Save One Life; the last time they would see Val.

“However, 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.”

One of the hallmarks of a true leader is not what position they held, or how many accolades they receive, but what legacy they leave behind. Val was a transformational leader who changed our world, for the better. RIP Val; your work is done. Let those you mentored carry it forward.

Learn more about Val Bias in the movie “Bad Blood,” available on most streaming platforms.

Learn more about Val’s contributions in this article in HemAware.

NHF’s 58th Annual Meeting


From Thursday to today I attended the NHF’s annual meeting in Philadelphia, the city of “Brotherly Love.” I’ve been attending each year since 1991, and they grow bigger each time! It was a great pleasure to meet up with so many friends and acquaintances.

The theme of this year’s meeting was “Opening New Doors.” Particular attention is always given to new families of babies diagnosed with a bleeding disorder, to orientate them to our community and provide resources. There is a social opening night, welcoming ceremony, many sessions headed by experts on a variety of topics, dinners, a wonderful outing to the Franklin Institute and a final evening that features a band, dancing, lots of food and more. This may have been the biggest NHF meeting ever, with thousands in attendance. It was a beautiful sight to see on the dance floor, when the band took a break, so many little boys of all ages whooping it up, running, sliding and dancing. Healthy and active, these boys are living proof of the benefits of prophylaxis, plentiful medicine and regular HTC visits.

I gave three presentations: a brief one at ZLB Behring’s headquarters as part of its open house for the Philadelphia community (ZLB, the Pharma Formerly Known as Armor, Centeon and Aventis Behring, is my oldest business relationship in the community, spanning 18 years!); a talk on “Prophylaxis and Insurance,” and how insurers may be targeting prophy next on the cutting block; and a look at “Hemophilia History as His Story”… the history of our community from 1987, and how it paralleled my son’s life. I’ve never discussed publicly our story and what we went through, and it was really fun to show photos and put it in the context of what was happening in hemophilia, and the world in general. It was rather sad to also note publicly the many consecutive years (oh, about 17) that the Boston Red Sox did not win the World Series!

As always, the companies that fund our community were there with booths, give-aways, information and games for the children. Strolling through the displays and booths gave families the chance to ask company reps questions and to compare products and services.

There were too many excellent sessions to discuss here. But some hot topics included reimbursement, healthy joints, physiotherapy, and surviving natural disasters through planning. Be sure to sign up for “HemAware,” the NHF’s publication, which I am sure will review the meeting in greater detail. And try to attend a national meeting sometime! The next one is November 1-3, 2007 in Orlando. I hope to see you there!

Thanks to the NHF staff for their phenomenal teamwork in bringing this event to our community: it was a huge success in every way.

Next week: I’ll be touring the Bayer Kogenate FS plant in Berkeley, California. Please check in to see what it’s like!

(Photos: Chad B. and Tom A.; me with some friends from Baxter in their “booth suits”; the gang at Recombi, who became new partners of ours this year; Me with Gail)

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