National Hemophilia Foundation

Remembering Legendary Leaders

Laurie Kelley January 2, 2022

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.

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.

Off to NHF in Chicago

Laurie Kelley November 7, 2011

This week is National Hemophilia Foundation’s 63 Annual meeting, so I am off to Chicago Tuesday to meet with many old friends and colleagues. These include patients (some of whom I’ve known since infancy and who are now in college!), parents, home care reps, pharmaceutical reps, hemophilia organization leaders, and more. It’s always a great event!

NHF expects probably 2,000-3,000 people to attend.

I hope to post during the week about what we hear and see.

One thing on everyone’s mind is reimbursement. With the new Affordable Care Act, so much has changed and is changing. We need to learn all we can at meetings like this to prepare for unexpected costs, and changes in health care delivery. One thing is certain: the hemophilia industry as we know it is permanently changing. And change may come faster than we think.

To start learning about current changes in reimbursement, start reading!

A great place to start? CSL Behring’s latest Key Issues Dialogue focuses on diminished access to care for people with rare diseases via interviews with our nation’s top specialists and advocates for people with chronic disorders.

Book I Just Read
Managing the Nonprofit
Peter Drucker

Drucker is considered a business guru, though this book, published in 1990, is a bit outdated. It’s a quick read, and loaded with nutritious food for thought. Drucker defines how nonprofits are different than for-profits, and was one of the early oracles to say that nonprofits need to think and operate like businesses. And leadership is key! He gives great synopsis of what effective leadership is. One I love and still use: “The most important way to develop someone is to use them as teachers.” And I live by: “Don’t guess, go ask.” Too many business people fail when they assume. This book is short, can be read in one sitting, but gives you hours of materials to think on. Three stars.

NHF’s New Direction, Movie

Laurie Kelley November 17, 2008

The NHF ushered in new leadership at the 60th Annual Meeting in Denver this past week, just as our country has voted in new leadership. With many parallels to be made, there is a feeling that our community is ready for change. Val D. Bias, person with hemophilia and already a prominent leader in our community, was hired as the new CEO of NHF. The community faces a multi-front challenge to its current status: increasing pressure from payers to lower reimbursement rates; payers forming specialty pharmacies to switch patients away from traditional home care companies and 340B programs; tightening of funds to donate; speaking with one voice and one message; forming coalitions with other rare disorder groups; rising obesity in the bleeding disorders community. Many of these challenges were addressed in depth in the various workshops

About 2,000 attendees were said to be present at this historic meeting. For most it was a great reunion of long time friends and colleagues, and for many it was a first glimpse of the community with all it has to offer.

I have been attending NHF meeting since 1992, and saw many long time friends. In speaking with representatives of industry: home care companies, HTCs, pharmaceutical companies and the NHF chapters and hemophilia nonprofits, the most frequently mentioned word could easily have been “change.” Things are changing in our community, and without vigilance, a voice, a strategy and action, we could stand to lose many of the gains we have fought so hard to win over the last decade in choice and access of services and products.

Opening Ceremony: Theatrics or Thunder?

Perhaps this is why the opening ceremony was so different than any other I have seen. The room was a Democratic or Republican National Convention theme. Vertical banners with state names were placed in sections; a large screen projected images from the podium; and red and blue balloons poised overhead in a net, waiting to be spilled. Different, definitely different, people murmured. There was a cordoned off area with red, white and blue streamers: only certain people were to sit there, apparently.

Then the lights went out and the somber and foreboding 12-minute trailer of “Bad Blood” was shown. When it was finished, lights went out again, then a spotlight shown on Val, alone on the podium, seated on a chair. Val spoke for most of an hour, sharing his vision of where NHF should lead the community. No doubt aware of the audiences’ curiosity about the trailer, he stressed, “Let’s put our past in a place of honor, where it belongs, and move forward.” With that he introduced the Campaign for Our Future, which was already introduced to chapter leaders in June.

The slogan is: Access to Care Today, Achieving a Cure Tomorrow. Val stressed four areas of focus:

Government awareness and support
Education for all life stages
Access to care at HTCs
Research and training

A check for $2 million was presented from Novo Nordisk to support the campaign. Most if not all the manufacturers have also contributed to the campaign, which hopes to raise $10 million to implement the campaign. Then the balloons overhead were released and everyone cheered and applauded. It seemed to be a new start for the NHF, and most people left feeling upbeat.

Later on, as people filtered out of the conference hall, there seemed to be second thoughts and questions by people. Many asked each other, “What did you think?” The trailer for “Bad Blood” was grim, dark, and pointed fingers some said. What was the point of the film? Have we not had 23 years of success, with no documented viral transmission? “What does the movie have to do with the new campaign?” one attendee asked. “If it’s for the future, why are we bringing up this past again?” Some people said they cried just watching the trailer as it evoked strong emotions of children contracting AIDS in the 70s. Some had nodded their heads approvingly as the film was being shown. Others feared the film was too strong, too biased, that it set the wrong tone for the NHF meeting: the movie would stir up negative feelings and fear in the absence of adequate general information about blood safety to new parents at a time when plasma products are just making a comeback. Everyone suddenly seemed to have a strong opinion. It was indeed a different kind of NHF opening: thunderous to make people take action, or theatrical to gain attention?

There was a lot to think about, and a lot to do. I was privileged to attend the Medical and Scientific Affairs Council (MASAC) to present my factor donation program, Project SHARE. As we donate millions of units of factor each year, we thought it a good idea to let MASAC know how we operate and answer any questions they might have.

The two and a half days NHF conference were filled with workshops, lectures, and symposia on all types of subjects related to hemophilia and von Willebrand Disease. Social events included lunches, raffles, and the final event, sponsored by Baxter: a wonderful and lively band, dancers, plenty of food, picture taking and dancing. Everyone got in on the dancing, which went till 11 pm. NHF planners and staff are to be commended for their ability to accommodate so many people with so many needs in so many sessions so perfectly and graciously.

If you attended NHF’s Annual Meeting this past week, please feel free to leave a comment! I’ll write next week about some of the meetings I attended while at the meeting.

See all the photos here!

SCHIP Restrictions, Record Number of Americans Uninsured

Laurie Kelley September 17, 2007

NHF has sent an important email appeal to all its constituents, which includes anyone with a child with a chronic disorder like hemophilia. In a nutshell, the Bush Administration is trying to prohibit an expansion of the SCHIP, which it feels would encourage families to abandon private insurance in favor of state/federal funded insurance. NHF disagrees with this assessment and is asking constituents to consider emailing the White House directly to oppose a veto. Here’s the gist of NHF’s email:

“Bush Administration Blocks Expanded Healthcare Coverage for Children: Take Action Now
Prior to going into month-long recesses, both the House and Senate approved bills reauthorizing the State Children’s Health Insurance Program (SCHIP), and allowing more states to expand eligibility for the program to more children in families above the federal poverty level. However, the Bush Administration, through the federal Center for Medicaid and State Operations, has instituted new policies that would severely restrict the ability of states to expand the SCHIP program, covering more children. In addition, these new restrictions may threaten the existing coverage that children in many states are already receiving. NHF has drafted a sample letter to President Bush expressing disagreement with this action and asking him to rescind it. You can help make a difference by personalizing the letter below with your own story and sending it to President Bush today.

Click here to view and personalize the letter, and send it to President Bush now.”
http://gomembers-ecommunicator.com/campaign/ProtectSCHIP

When I read this, I found this to be the most disturbing part of the news (taken from NHF’s website): “Ironically, the Congressional Budget Office reported that President Bush’s budget did not include enough funding for the SCHIP program to cover the children who are enrolled now. Therefore, it will not be able to cover those who are eligible but not yet enrolled, and/or those who might be eligible under an expanded program.” Ouch; I know personally a lot of families with hemophilia out there truly struggling.

But I encourage readers to investigate what’s up behind the headlines. For instance, I just read in the news wires today that 2 million more Americans are going without health insurance to bring the total to 47 million Americans without health insurance (making it seem even more perilous). Along with the news about SCHIP, this seems outrageous. But after digging a little, I read that these numbers may be misleading. The 47 million also includes illegal aliens and the temporarily unemployed. And yet, if you think about it, the current housing crisis will no doubt affect the wealth and employment of many, leaving more Americans than ever dependent on the government for health coverage. So, it’s not a great time to cut health care budgets, even though we’ve been saying to prepare for this for some time.

But don’t just jump on the bandwagon and fire off a message to the White House without doing your homework. Read the text of the issue, and know what the argument is about. See if you agree with it. NHF has put an explanation of what the issue is on its web site and you can check through the internet. (www.hemophilia.org) And if you are a family facing insurance difficulties, please call NHF (800-42-HANDI), or even call us and we can help direct you to someone who can help.

NHF’s 58th Annual Meeting

Laurie Kelley October 15, 2006

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!