Sickle cell disease is a genetic blood disorder that’s globally pervasive—an estimated 100 million people worldwide carry the trait for it. Yet it has been historically under-addressed by the medical community. In 2015, the American Society for Hematology began taking steps to change that.

“It’s a devastating disease, it’s a cruel disease,” says ASH Deputy Executive Director Matthew Gertzog, CAE. “But there are extraordinary opportunities for new treatments and therapies. It’s one of these areas where we’re on the cusp of extraordinary breakthroughs that impact what has been an underrepresented and marginalized population.” A 2016 ASH report notes that the disease is most prevalent in malaria-endemic regions of the world, primarily Africa, the Middle East, and South Asia.

To begin making headway, in 2015 ASH launched its Sickle Cell Disease Initiative, which received a Summit Award in ASAE’s 2019 Power of A Awards competition. The effort includes data collection, research, protocols for newborn screening, advocacy, clinical trials, and more.

To ensure ASH could manage all of those moving parts, it started small, focusing first on work within the United States. In 2016, it launched the Sickle Cell Disease Coalition, which now includes more than 85 stakeholder groups, to work on awareness and advocacy. That effort has produced a few successes, most notably the passage of a bill in Congress in 2018 authorizing the creation of a grant program in the Centers for Disease Control and Prevention focused on sickle cell disease research.

From there, ASH began working with the research community, launching a collaborative in 2018 to broker partnerships, identify priorities, and centralize data. “The research collaborative is probably one of the most impactful efforts we’ve made in the years that I’ve been with ASH,” Gertzog says. “It has the promise to introduce new therapies and potentially new cures.”

Until the cure arrives, ASH has been using the initiative to address access-to-care issues, first in the United States and more recently in sub-Saharan Africa, where the disease is more prevalent. ASH is in the process of launching a consortium focused on newborn screening in Africa that will meet there annually to discuss challenges and create partnerships.

“We have a [screening] protocol in the United States, and what we’re trying to do is find countries in Africa that have the resources and desire to get the appropriate protocol into their healthcare systems,” Gertzog says. “The key to long-term success for the program is the establishment of connections and resources. Ultimately, the goal is sustainability.”

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