Georgia Sickle Cell Bill Advances, but Advocates Decry Lack of Funding for Black-Led Groups

As momentum builds around new sickle cell legislation, advocates say Black-led organizations on the front lines are still being shut out of critical funding.

Apr. 13, 2026 at 2:36pm

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An extreme close-up X-ray photograph showing the ghostly, translucent outline of a human red blood cell with an abnormal sickle shape, conceptually representing the medical challenges of sickle cell disease.An X-ray image of a sickle-shaped red blood cell, highlighting the complex biological challenges of sickle cell disease that community-based organizations work to address.Atlanta Today

As a new sickle cell disease bill advances in Georgia, advocates are raising concerns that Black-led community organizations serving sickle cell patients are being excluded from crucial funding, even as awareness and legislative action around the disease grows. Dr. Lakiea Bailey, a sickle cell patient and founder of the Sickle Cell Community Consortium, says that while progress is being made, the lack of direct investment in Black-led groups doing the on-the-ground work is a 'painful contradiction' that must be addressed.

Why it matters

Sickle cell disease disproportionately impacts the Black community, yet advocates argue that the organizations closest to the issue and most trusted by patients are often overlooked when it comes to funding. This exclusion can have real consequences, as community-based groups are often the first line of support for families navigating care and connecting to resources.

The details

A new Sickle Cell Disease Protection Act has advanced in the Georgia legislature, but advocates say the larger issue is how federal sickle cell funding is being distributed. While Congress approved over $20 million for sickle cell programs in February, many Black-led organizations doing direct community work say they are not seeing those dollars. Instead, the money is often going to larger, white-led organizations that may not have the same deep ties to impacted communities.

  • On March 26, 2026, the Sickle Cell Disease Protection Act advanced out of the Georgia Senate Health and Human Services Committee.
  • In February 2026, Congress approved a fiscal package that included more than $20 million for sickle cell programs.

The players

Dr. Lakiea Bailey

A sickle cell patient who earned a bachelor's degree in biochemistry and molecular biology and a doctorate in molecular hematology and regenerative medicine. She founded the Sickle Cell Community Consortium to bring together patients, caregivers, community-based organizations, researchers, and health care leaders to address the needs of the sickle cell community.

Sickle Cell Community Consortium

An organization created by Dr. Lakiea Bailey to address the urgent and often overlooked needs of the sickle cell community.

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What they’re saying

“As someone who has lived with sickle cell disease since childhood, I know firsthand that community support can mean the difference between surviving and truly living. That is why investing in community-based organizations is not optional. It is essential.”

— Dr. Lakiea Bailey, Founder and Executive Director, Sickle Cell Community Consortium

“For too long, Black-led organizations have been expected to do the hardest work with the fewest resources. It is deeply troubling to see millions allocated for sickle cell programs while the very organizations rooted in the community are being shut out. If the goal is to help patients, the dollars must reach the people doing the work on the ground every single day.”

— Dr. Lakiea Bailey, Founder and Executive Director, Sickle Cell Community Consortium

“We cannot keep celebrating progress in legislation while ignoring the inequity in funding. Visibility without investment is not justice. If lawmakers and decision-makers are serious about changing outcomes for sickle cell patients, then they must also be serious about funding the Black-led organizations. The Black community built the advocacy, carried the burden, and sounded the alarm on sickle cell. We should not have to beg for a seat at a table we built.”

— Dr. Lakiea Bailey, Founder and Executive Director, Sickle Cell Community Consortium

What’s next

From April 7 to 11th, Dr. Bailey will host the largest convening of Sickle Cell patients, Advocates, physicians and community at The Westin Atlanta Airport, 4736 Best Road, Atlanta, Georgia. 'This moment represents more than a convening; it represents alignment,' said Dr. Lakiea Bailey, Founder and Executive Director of the Sickle Cell Consortium. 'By bringing together leadership, community voice, and national strategy in one coordinated effort, we are creating space for real progress and collective impact.'

The takeaway

This story highlights the ongoing struggle for equitable funding and support for Black-led community organizations that are on the frontlines of addressing sickle cell disease, which disproportionately impacts the Black community. Despite growing legislative attention, the exclusion of these grassroots groups from crucial resources threatens to undermine progress and perpetuate longstanding disparities.