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WASHINGTON, D.C. – U.S. Representatives Troy A. Carter, Sr. (D-LA) and Alma Adams (D-NC) recently sent a letter to U.S. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. and Health Resources & Services Administration Administrator Thomas J. Engels urging the Health Resources and Services Administration’s (HRSA) not to delay critical funding for the Maternal and Child Health Bureau’s Sickle Cell Disease (SCD) Newborn Screening Follow-Up Program (Follow-Up Program). The members want to ensure the important services provided by sickle cell disease community-based organizations (CBOs) do not lapse. Any delay in awarding grants will impact the continuation of the critical services provided by the CBOs that participate in the program.
“While newborn screening for sickle cell disease (SCD) occurs in every state, many individuals are lost to follow-up care or face barriers to access high-quality care throughout their lifetime,” the Members wrote. “HRSA’s Sickle Cell Disease Newborn Screening Follow-Up Program works in tandem with HRSA’s Sickle Cell Disease Treatment Demonstration Program (SCD TDP) to help address these access issues. The Follow-Up Program focuses on providing supportive services to individuals living with sickle cell disease and their families while the SCD TDP focuses on the clinical aspect of care for individuals with SCD and bolstering provider education related to SCD.”
The current five-year grant cycle for this program ends August 31, 2026, but HRSA has yet to issue a new Notice of Funding Opportunity for the next grant cycle. Without an announcement of future funding, it is unclear if the SCD Follow-Up Program will be extended. Congress provided full funding for the program in 2026 at $7 million and there is active support for continued funding in 2027.
“Sickle cell disease doesn't wait, and neither can we. The 25 community-based organizations funded through HRSA's Follow-Up Program are lifelines for patients and families across this country — connecting them to care, to specialists, and to hope,” said Rep. Carter. “Congress did its job by funding this program in 2026, and we stand ready to fight for continued funding in 2027. But right now, HHS must act. Every day without a new Notice of Funding Opportunity is a day these organizations are left in limbo, and every day they are in limbo, patients are at risk. I will not stop pushing until these grants are secured and the sickle cell community has the certainty it deserves.”
“I watched my sister suffer and lose her life to sickle cell disease at just 26 years old. That loss is why I have spent my career in Congress fighting to ensure no family faces that same devastating struggle alone, without access to proper care,” said Rep. Adams. “The 25 community-based organizations funded by the Follow-Up Program are the backbone of the sickle cell community, connecting patients with education and resources, linking families to specialists, arranging transportation to care, and providing financial support when families need it most. These organizations are not a luxury. They are the infrastructure that keeps patients alive. Every day this funding is delayed puts that infrastructure at risk of collapse. I am calling on HHS to issue a new Notice of Funding Opportunity for these grants immediately. We cannot allow politics or bureaucratic inaction to cost people their health, or their lives.”
“The Sickle Cell Disease Association of America, Inc. (SCDAA) thanks Representatives Troy Carter and Alma Adams for taking the lead on urging the Administration to extend the grants for HRSA’s Sickle Cell Disease Newborn Screening Follow Up Program. Since 2002, Congress has funded these grants to support sickle cell disease community-based organizations (CBOs). They are used to provide essential direct services, referrals, and education to those living with sickle cell disease,” said Regina Hartfield, President and CEO of SCDAA. “CBOs are the first place a sickle cell warrior goes for help. CBOs—and the sickle cell community--cannot have this grant program lapse.”
Additional lawmakers signing onto the effort include Reps. Pete Aguilar (D-CA), Sanford Bishop (D-GA), Suzan DelBene (D-WA), Shomari Figures (D-AL), Al Green (D-TX), Adelita Grijalva (D-AZ), Steven Horsford (D-NV), Glenn Ivey (D-MD), Jonathan Jackson (D-IL), Robin Kelly (D-OH), Summer Lee (D-PA), LaMonica McIver (D-NJ), Seth Moulton (D-MA), Kim Schrier (D-WA), Terri Sewell (D-AL), Emilia Sykes (D-OH), Shri Thanedar (D-MI), Rashida Tlaib (D-MI), Paul Tonko (D-NY), Marc Veasey (D-TX), and Nikema Williams (D-GA).
Read the full letter here.
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WASHINGTON, D.C. – Today, Congressman Troy A. Carter, Sr. (LA-02) secured deadline extensions from the Federal Emergency Management Agency (FEMA) for the Joint Infrastructure Recovery Request (JIRR) program in New Orleans to June 2, 2028. FEMA also agreed to review other active Katrina recovery projects across south Louisiana for potential extensions.
“Twenty years after Hurricane Katrina, we are still dealing with the aftermath of the costliest natural disaster in U.S. history,” said Rep. Carter. “FEMA’s partnership and resources have been the backbone of Louisiana's rebuilding efforts. While Louisiana has closed out 99% of Katrina recovery projects, the scope and technical complexity of the few remaining projects require additional time to complete responsibly and in compliance with federal requirements. I am happy FEMA granted this extension and will continue to fight for all funding that my community needs.”
“This extension is critically important for the people of New Orleans because it gives us the ability to complete transformative infrastructure projects that are already underway and continue delivering long-overdue improvements to our residents,” said Mayor Helena Moreno. “An enormous amount of work went into securing this extension, and I am incredibly proud of our team for their relentless advocacy and coordination to help make this happen.”
JIRR is a comprehensive FEMA-funded initiative to repair 10,000 blocks of streets and drainage systems damaged by the historic floods of Hurricane Katrina. On Wednesday, Congressman Carter pressed Secretary Markwayne Mullin, U.S. Department of Homeland Security, in a committee hearing to grant time extensions for these projects to ensure they are completed responsibly.
Additionally, Congressman Carter sent letters this past December and February to the U.S. Secretary of Homeland Security in support of the state’s extension requests for the JIRR program and other active Hurricane Katrina recovery projects in Louisiana.
You can read those letters here and here.
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BATON ROUGE, LA – Congressman Carter has released the following statement in response to Louisiana’s congressional map:
“I have always believed that Louisiana's congressional districts should fairly reflect the people of Louisiana.
“The demographics of our state are clear. African Americans comprise approximately one-third of Louisiana's population.
“As a matter of fairness and representative democracy, African American voters should have a meaningful opportunity to elect candidates of their choosing.
“While the Supreme Court's decision in Louisiana v. Callais has established the current legal framework governing congressional redistricting in our state, it does not change the underlying demographic realities of Louisiana. Nor does it diminish the importance of ensuring that all communities have a voice in our democratic process.
“Throughout the redistricting debate, lawmakers cited several factors in support of the map they ultimately adopted, including the protection of incumbents.
“If incumbency protection was an important consideration, then it would have been appropriate to apply that principle consistently, including with respect to Congressman Cleo Fields and the constituents he represents.
“Reasonable people can disagree about maps and legal interpretations. What should not be disputed is the principle that every citizen deserves fair and effective representation.
“For generations, Louisianans have worked to build a democracy that is more inclusive, more representative, and more reflective of all our people.
“That work continues today.
“My commitment remains unchanged. I will continue to support fair representation, equal opportunity at the ballot box, and a congressional delegation that reflects the diversity, strength, and promise of Louisiana.”
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About Troy Carter
The Honorable Troy A. Carter serves as Congressman for Louisiana’s 2nd District, representing New Orleans, Jefferson, St. Bernard, Lafourche, and the River Parishes, including St. Charles, St. James, St. John the Baptist, Ascension, Assumption, and Iberville Parishes.
Now in his third term in the U.S. House of Representatives, Congressman Carter was first elected to the 117th Congress. Congressman Carter serves on the exclusive Committee on Energy and Commerce in the 119th Congress and continues to serve on the House Homeland Security Committee and the Democratic Steering and Policy Committee. He was also selected by Democratic leadership to be a Deputy Whip on the House Floor. Congressman Carter was also elected 1st Vice Chairman of the Congressional Black Caucus and is a member of the Regional Leadership Council.