When Val D. Bias became chief executive officer of the National Hemophilia Foundation (NHF) in 2008, he wasn’t just the right person for the job, “he was the perfect person for the job,” says his friend and bleeding disorders community colleague Mark Skinner, a past president of NHF, the World Federation of Hemophilia and the World Federation of Hemophilia USA.
Before becoming CEO of NHF, Bias, who has hemophilia B, served the bleeding disorders community in many capacities. He had been executive director of the Hemophilia Council of California, a consultant to the Centers for Disease Control and Prevention, a lobbyist for NHF in Washington, DC, and board president of the Hemophilia Foundation of Northern California.
“I’ve been lucky,” Bias says. “I’ve had the good fortune of working with people who are committed to helping people with bleeding disorders, and who are very good at their jobs.”
While Bias is characteristically modest when he reflects on his years at NHF, the people who’ve worked closely with him are quick to set the record straight.
Jordana Zeger, NHF’s chief financial officer, says the key changes Bias made at NHF were carried out with an eye toward the future. “Val had a very long-term outlook. He had a vision for where the organization needed to go, and he always figured out a way to get there,” Zeger says.
Expanding and Improving NHF
Bias’ colleagues at NHF say his greatest legacy may be the creation of the ACT (Access to Care Today, Achieving Cures Tomorrow) initiative in 2009. ACT was a wide-ranging program designed to improve access to care for people with bleeding disorders, support local chapters, spur advocacy at the state and federal levels, and promote and help fund research into cures and the training of healthcare professionals.
“Val’s goal with the ACT initiative was to standardize access to resources and education for every person with a bleeding disorder, whether they lived in a big city with great resources or a small rural community where the nearest chapter was miles away,” says Dawn Rotellini, NHF’s chief operating officer and a former chapter executive director.
The ACT initiative also had a major impact on improving chapter infrastructure, says Michelle Rice, NHF’s chief officer of external relations, who previously served as executive director of Hemophilia of Indiana for nine years. “Val expanded chapter training, including adding a chapter track at the annual conference, and made the bar to be an NHF chapter not monetary but based on the chapter’s ability to meet standards so they could effectively serve their community,” Rice says.
Adds Rotellini: “This is an important legacy, because as treatments improve and the bleeding disorders community changes, the chapters must be strong to be able to weather those changes.”
“The ACT initiative was Val’s vision as to what the community could become, and it was critical to improving NHF,” says Zeger. “The relationship he was able to build with the chapters was special, and it made NHF and the chapters stronger.”
Advancing Bleeding Disorders Research
Bias was also a driving force behind the creation of My Life, Our Future (MLOF), a nationwide campaign that through December 2017 offered free genotyping to people with hemophilia A and B, and to confirmed and potential carriers.
The goals of the MLOF program, which began in 2012 as a partnership between NHF, the American Thrombosis & Hemostasis Network, Bloodworks Northwest and Biogen Idec (now Bioverativ), are to help families understand more about their disorder and to help researchers and clinicians better understand the connections between hemophilia’s genetic cause and clinical outcomes. Participants were also able to choose to have their de-identified genetic data and blood samples become part of the MLOF Research Repository. More than 9,000 participants agreed to share their data.
“MLOF is a huge part of Val’s legacy,” Rice says. “Years before it became reality, he believed that in order to really make an impact on the treatment of bleeding disorders, researchers needed to strengthen research by getting as much information on individuals and obtain blood samples. When those who started the initiative said, ‘Let’s try and get 5,000 samples,’ Val said we need 10,000 samples, and through his efforts we got them,” she says.
“Without Val, MLOF would probably never have happened,” says Barbara Konkle, MD, chief scientific officer for Bloodworks Northwest in Seattle. Konkle says Bias played a critical role in supporting MLOF by obtaining financial support, getting the word out to the community and doing presentations about the campaign at NHF’s annual bleeding disorders conference.
“One of the major challenges in hemophilia is to determine which patients will develop inhibitors and which won’t,” Konkle says. “We are also trying to explain why one person bleeds differently than another and why some people react differently to the same treatment. Answering these questions, which may be possible because of the MLOF Research Repository, could greatly aid in the treatment of people with hemophilia.”
NHF has long supported and funded a broad range of research, and the number of research awards increased under Bias’ tenure. “Although we have been lucky to get good funding to treat patients, getting funding for research has always been a challenge. It’s important to replace the researchers and treating physicians and to support new research that will one day lead to better treatments and hopefully a cure,” Bias says.
Bias’ friend and colleague Ellen Riker, senior vice president of CRD Associates, a lobbying and consulting firm in Washington, DC, says Bias also felt the need to do more for people with von Willebrand disease (VWD). In 2014, Bias and Riker worked together on an NHF-sponsored summit to develop a strategic approach for NHF to better serve the VWD community and to improve care for VWD patients within hemophilia treatment centers. Summit participants included key figures in VWD research, care and policy, with representatives of such stakeholders as patients and families, clinicians, payers, the pharmaceutical industry and federal agencies.
Making Important Strides on Advocacy
While working as a lobbyist for NHF in Washington, DC, in the 1990s, Bias was instrumental in the passage and funding of the landmark Ricky Ray Hemophilia Relief Fund Act of 1998. The new law compensated people with bleeding disorders who contracted HIV from contaminated blood products—people like Bias himself.
The relatively quick passage of the bill was a miracle, recalls Bias. “The bill passed and was fully funded in six years. It took 30 years for Japanese Americans to get money due to Japanese internments during World War II, and 18 years for the September 11th Victim Compensation Fund to become law.”
“A united and motivated hemophilia community with Val at its helm was key to making this miracle happen,” Riker says. “He was able to inspire fellow men with hemophilia, parents and family members to come to Washington and tell their stories to move the legislation forward. He also maintained good relations with all other HIV/AIDS organizations.”
Mark Skinner says Bias’ varied résumé was a particularly valuable asset for working as a lobbyist. “When Val came to DC, he had a background that included community grassroots skills, chapter affiliate skills, people skills and the ability to relate to almost anybody,” Skinner says.
“It didn’t take him long to understand the politics of DC,” adds Skinner. “Very few people have this skill set and a personality that can get along with everyone, from congressmen, government agency heads, advocacy group leaders and patients.”
Achieving Healthcare Reform
Bias’ advocacy skills served him especially well when it came time to push for healthcare reform under President Barack Obama. When the Affordable Care Act (ACA) finally became law in 2010, it changed healthcare in America. Under Bias’ leadership, NHF’s advocacy efforts helped ensure that the ACA included key provisions such as eliminating lifetime caps and annual limits, eliminating preexisting condition exclusions, prohibiting insurance ratings based on health status and allowing dependents to stay on their parents’ health insurance plans longer.
“Val saw the importance in engaging in the ACA debate and was happy to have hemophilia cast as a population that would directly benefit from immediate changes in insurance policies such as lifetime and annual caps on insurance and preexisting conditions,” Riker says.
Although the ACA was a federal law, its implementation took place at the state level.
“Val realized NHF had to hire more staff to maximize the effects of the ACA in the states,” Riker says. “They needed boots on the ground, and they expanded their policy team to include people dedicated to state issues.”
Today, five people are on the NHF policy team, three whose primary responsibility is working with the states. Team members work with chapter staff and volunteers, and identify and respond to legislative staff.
The expanded policy team also meets with State-Based Advocacy Coalitions (SBACs), says Michelle Rice. “They provide funding, training and help formulate strategic plans for advocacy.” Today, chapter members comprise 15 SBACs.
Leaving NHF Fiscally Strong
Colleagues also credit Bias with transforming NHF into a financially sound organization.
“When Val became CEO, there were 35 NHF chapters with only 15 full-time paid staff. Today, there are 52 chapters and each chapter has a full-time paid executive director, with many chapters having additional staff,” says Rotellini.
“Since Val’s arrival, NHF has doubled its revenue,” she adds. “We currently have a $23 million operating budget and a healthy reserve.” Says Rotellini: “Whoever the new CEO will be, he or she will be lucky to inherit such a strong legacy.”