Continued from cover
“Health equity goes beyond the things that we can see in people,” said Leonard Valentino, MD, NBDF president and CEO and session moderator. “Nothing will work if we’re not all at the table. It’s the inclusion of all voices, not just some of the voices. That was part of the whole reason for the brand change: to make people feel included and give you a seat at the table. Our work is stronger and more powerful when you have a seat at the table.”
Keri L. Norris, PhD, JM, MPH, MCHES, discussed NBDF’s work in defining health equity, diversity and inclusion. “We’re talking about all the differences that Len spoke about, all the things that make you and I unique, the things that we need to learn about one another, the things we can respect, the things that we celebrate.”
Building trust is an important first step, Dr. Norris said. “One singular team cannot do it alone. One singular organization cannot do it alone. Each of us needs to have ownership in it and we need to be serious about it.”
Jane Cavanaugh Smith of Sanofi, the mother of a now 30-year-old son with hemophilia, discussed the privilege of access to care. “I was privileged in New England with access to some of the best healthcare in the country and a strong chapter. For my son, it may have come from his inhibitor experience, which created challenges and opportunities. When you find your people, you feel an extra closeness and affinity. While it’s helped him with his bleeding disorder, it’s helping him be a better person.”
Fel Echandi, a BDC planning committee member, discussed access to factor products for those in other countries. “People have better access, but there’s still the problem of the language barrier at times.”
Perry Jowsey III, director of the Colorado chapter, spoke on how his chapter had reached out to the substantial Spanish-speaking community in his state. “Prior to me coming on board, there wasn’t a lot of engagement with that community. We’ve tried to take that up several rungs.”
That included putting together a Spanish language track at the chapter’s annual meeting and having some sessions translated. It meant translating forms into Spanish and engaging the community. What the chapter leaders found was surprising: Spanish speakers “wanted to get more involved with the larger community. We have a couple of champions that are leaders in the community that we recruited to promote some of our more general programs, to present it in a way that was inviting and inclusive, and design it in a way that everyone could participate fully.”
Rodney Dickson of Takeda discussed inequities at the global level. “It’s never lost on me the privilege I have regarding my own health with the access that we are afforded here in the U.S. compared to other countries. We believe all individuals have a fair and just opportunity to the best life they can live.”
