Reps. Lee, Davis, and Burgess Introduce Legislation Calling for Sickle Cell Trait Research

Washington, D.C. – Today, Congresswoman Barbara Lee (D-CA) and Congressman Danny K. Davis (D-IL), co-chairs of the Congressional Sickle Cell Disease Caucus, and Congressman Michael Burgess (R-TX) reintroduced two key pieces of bipartisan legislation to address Sickle Cell Disease. The first calls for increased investment in Sickle Cell Trait research and a national campaign to raise awareness about the Sickle Cell Trait, and the second recognizes September as National Sickle Cell Disease Month.

The CDC estimates that at least 3 million people in the United States have the sickle cell trait which can lead to sickle cell disease, including 1 in 12 African Americans and 1 in 100 Latinos. This legislation calls on Congress to support in SCT research to ensure access to screening and appropriate counseling for carriers of SCT and to increase understanding of the implications of SCT. 

“Sickle Cell Disease affects an estimated 100,000 people in the U.S. and millions carry the sick cell trait,” said Congresswoman Barbara Lee. “As we recover from a global pandemic that has strained our public health systems, it’s more critical than ever that we invest in research and awareness campaigns to ensure that we combat this disease, especially in communities of color and those who are medically underserved. I’m proud to reintroduce this legislation to support research and ensure access to testing and lifesaving information. I also hope that this legislation also encourages a conversation about how we can raise awareness among those living with Sick Cell Trait.”

“More people are living with SCD than with other genetic conditions and they have less access to comprehensive coordinated care.  These two pieces of legislation are an important step toward improved treatment and, ultimately, a cure,” said Congressman Danny K. Davis. “We are also reminded that it is no coincidence that SCD arises from genetic adaptation to malaria resistance and that the slave trade was, in large measure, driven by the search for slave labor adapted to conditions in malaria infested regions of the United States.” 

“Sickle cell patients know a unique kind of pain,” said Congressman Michael C. Burgess, M.D. “ I remember treating patients in the emergency room when I was a resident at Parkland Hospital in Dallas. For decades, the treatment options for these patients remained the same and they remained inadequate. Progress has been made towards finding a cure for this disease, and we must build on that momentum. We must do all that we can to help raise awareness and invest in research to one day provide a cure for this disease. I appreciate my friends, Congresswoman Barbara Lee and Congressman Danny Davis for working with me to bring forward this legislation.”

For the full text of the Sickle Cell Disease Trait legislation, click here.