Sickle Cell Community Worried About Critical CDC Cuts To Research, Data Collection

By Alani Letang, Atlanta News First

Published: Apr. 10, 2025 at 10:35 PM EDT

View the full story here.

ATLANTA, Ga. (Atlanta News First) - The latest round of CDC cuts could drastically impact those with sickle cell disease. Research teams could be eliminated and affect data collection of the blood disorder.

People living with sickle cell tell Atlanta News First they are worried because the programs and treatments they need rely on federal support.

“If we can’t keep the lights on, we can’t service the people,” said Blaze Eppinger, who lives with sickle cell and works at the Sickle Cell Foundation of Georgia.

Eppinger lives with sickle cell and works at the Sickle Cell Foundation of Georgia. He handles social media for the foundation while being a patient advocate.

The foundation is a one-stop shop for people living with sickle cell, a painful blood disorder presented at birth. The foundation has a new Sickle Cell Sanctuary that offers holistic services such as massages, acupuncture, reflexology, and more.

Now their funding is a concern, with another round of CDC cuts aimed at sickle cell.

“I’m not surprised because we’ve been fighting for sickle cell for so long. It’s one of the oldest genetic blood disorders with the least amount of breakthroughs, least amount of therapies,” Eppinger said.

Nearly half of the CDC staff that works on developmental disabilities and birth defects are gone. This has wiped out research teams for adults with sickle cell and cognitive disabilities.

Eppinger said the cuts are contradicting to President Donald Trump’s promise to Make America Healthy Again.

“So if you go against what you sold the general public, it’s kind of like did you ever mean anything you were saying by cutting these programs that help us,” Eppinger said.

Collecting data on people with sickle cell is likely to be halted.

Keecilon Wright also lives with the disorder.

She said that proven data is needed to write grants for several programs at the foundation.

“We won’t be able to get more funding. Sickle cell disease needs more funding so we can fund more program to continue to allow people to live well with sickle cell disease,” Wright said.

With billions of dollars in cuts at stake, Health and Human Services Secretary Robert F. Kennedy said, “When it comes to healthcare, that’s a difficult question because people have a choice about how sick they are going to be, many people. If you don’t have any choice, then we should give you all the resources that you want, but I mean... it’s a moral question too, and it’s a philosophical question.”

However, Eppinger said there is no question at all.

“When there is effort and there’s research and there’s breakthroughs and there’s funding put behind this, we see it in the community. We see people having better results and better outcomes,” Eppinger said.

Kennedy has expressed openness to restoring gutted programs but has not done so yet.

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