In a world where certain health conditions dominate headlines and funding priorities, sickle cell disease — a genetic blood disorder affecting millions globally, particularly within Black and Brown communities — continues to battle against systemic neglect. That’s why organizations like the Sickle Cell Consortium aren’t just important; they are vital. And this year, as the Consortium celebrates 10 years of life-changing work, their mission feels more critical than ever.
Celebrating a Decade of Advocacy
In an exclusive interview, Dr. Lakiea Bailey — sickle cell advocate, educator, research scientist, and warrior herself — shared how the Consortium plans to honor a decade of leadership and resilience. Throughout 2025, the organization will host multiple events, collaborate with diverse partners, and revive key initiatives like We Are The Cure — a campaign calling for urgent action not just in blood and bone marrow donations, but also in organ donation.
“The sickle cell community needs more than just blood — we need organs,” Dr. Bailey emphasized. The renewed focus will be front and center during the Leadership Summit kicking off Wednesday, April 23, marking the beginning of a year-long push for greater community involvement and education.
A New Approach to Leadership
While the Leadership Summit has always been a space to update the community on advances in sickle cell and pharmaceutical research, this year’s gathering shifts gears toward practical empowerment.
“It’s one thing to hear someone tell you what to do. It’s another to pull out your laptop and walk through applying for a grant right there,” Dr. Bailey explained. With more hands-on workshops and real-time learning, the Consortium continues to prove why it’s not just a network — it’s a lifeline, especially for smaller organizations and individuals too often left out of the broader healthcare conversation.
Leading the Conversation on Transformative Treatments
Of course, no conversation about sickle cell advocacy is complete without discussing recent medical breakthroughs. I asked Dr. Bailey about the man in New York reportedly “cured” of sickle cell through transformative therapy.
While celebrating the milestone, Dr. Bailey urged caution with language. “I like to call it transformative rather than curative,” she said. “A cure suggests you can’t pass the trait to your children, which isn’t the case yet. But to see this success — it’s fantastic. We’re getting closer to making these treatments more accessible, though it still involves months in the hospital and lengthy follow-up.”
The Consortium remains committed to ensuring that the benefits of scientific advances reach all warriors, not just a privileged few.
Fighting New Challenges
Despite these triumphs, the Consortium faces fresh hurdles. Under new federal administrative policies, restrictions on travel and communications — particularly for organizations funded through HHS, NIH, and similar agencies — are cutting off critical resources. This impacts the Consortium’s ability to bring people to educational events, crippling its core mission.
With federal funding shrinking, Dr. Bailey and her team are finding creative ways to survive, relying more heavily on “in-kind” donations — services like printing, transportation, and volunteer support.
The Bigger Picture: Why the Consortium Still Matters
Founded to unify the voices of sickle cell warriors, caregivers, advocates, researchers, and nonprofits, the Sickle Cell Consortium has redefined what health equity looks like. They are not only transforming the research space but demanding that scientific innovation be informed by the very communities it aims to serve.
Education, another cornerstone of their mission, dismantles harmful myths, spreads life-saving awareness, and equips families to navigate a healthcare system that often leaves them behind. Through their tireless work, they are not just saving lives; they are reshaping futures.
In a time when healthcare disparities are finally being recognized, the Sickle Cell Consortium stands as a shining example of what real, patient-centered advocacy must look like. Their fight isn’t just about better treatments — it’s about justice, equity, and dignity.
The Consortium reminds us that change doesn’t happen because systems suddenly feel guilty. Change happens because communities demand it, organize for it, and refuse to be ignored. They are that voice, that movement, that hope — and they are, without question, one of the most critical forces for health equity today.
Want to help?
To join the movement, you can:
• Text SC3 to 61474 to join the bone marrow and organ donor registry.
• Visit sicklecellconsortium.org to learn more or offer in-kind services like printing, transportation, and logistics support.