Administration of Joseph R. Biden, Jr., 2024

August 30, 2024

By the President of the United States of America A Proclamation

Every person in this country deserves to live a healthy and fulfilling life, but nationwide, approximately 100,000 Americans have Sickle Cell Disease (SCD)âa painful genetic blood disorder that causes life-threatening complications such as strokes, infections, and organ damage. Those living with SCD often have to put the goals and plans of everyday life on hold because of the chronic pain and serious health difficulties associated with it. During National Sickle Cell Awareness Month, we recommit to finding a cure for SCD, supporting those who suffer from the disease, and addressing the health disparities that exist in communities across our Nation.

From dealing with the costs of expensive medical treatments and unplanned hospital trips to facing stigma and lacking access to health care providers with SCD expertise, many living with the disease face barriers to getting care, and there is no widely available cure. Though SCD impacts people of all backgrounds, it disproportionately affects Black and Hispanic Americans. Many children in the United States living with SCD are not receiving the treatments they need to prevent serious complications, and adults too often struggle with uncoordinated and fragmented care.

My Administration is working to deliver for people with SCD and their familiesâand that work begins with following the science to find new, improved treatments. Last year, the Food and Drug Administration approved the first gene therapies to treat those living with SCD and offer long-lasting results for SCD patients. They have also approved new drug therapies that can help people with SCD manage pain. And the National Institutes of Health is working to improve the quality of life for people with SCD. Those efforts include funding clinical trials for SCD pain management, identifying cost-effective drugs to treat SCD, and finding therapies that can lead to a full recovery.

At the same time, my Administration is working to make treatment for SCD more accessible and affordable to help close health disparities. We are empowering people with SCD on Medicare and Medicaid to have greater access to cell and gene therapy treatments. This will give hope to thousands of Americans with this rare and severe disease while improving health outcomes, increasing access to treatment, and lowering health care costs. The Health Resources and Services Administration (HRSA) is also expanding access to quality care for those with SCD through community-based organizations, ensuring they are taken care of no matter if they are at home or in the hospital. HRSA also provides resources to families whose newborns were diagnosed with SCD from the moment they were screened and throughout their treatment. Additionally, the Centers for Disease Control and Prevention has expanded data collection efforts to better target resources to regions of the United States with the greatest need for SCD support. And the Office of the National Coordinator for Health Information Technology is improving data collection and coordination efforts to drive more effective research, increase integrated care, and improve health outcomes for individuals with SCD and their families.

During National Sickle Cell Awareness Month, we recommit to finding better treatments, developing a cure, and celebrating the courage and resilience of all those living with this terrible disease. We also find hope in the health care professionals, researchers, and scientists working tirelessly to find transformative treatments for SCD.

Now, Therefore, I, Joseph R. Biden Jr., President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2024 as National Sickle Cell Awareness Month. I call upon the people of the United States to learn more about Sickle Cell Disease and the progress we are making to reduce the burden of this disease on our fellow Americans.

In Witness Whereof, I have hereunto set my hand this thirtieth day of August, in the year of our Lord two thousand twenty-four, and of the Independence of the United States of America the two hundred and forty-ninth.

Joseph R. Biden, Jr.

[Filed with the Office of the Federal Register, 8:45 a.m., September 4, 2024] NOTE: This proclamation was published in the *Federal Register *on September 5.

Categories: Proclamations : National Sickle Cell Awareness Month.

Subjects: Centers for Disease Control and Prevention; Food and Drug Administration; Medicare and Medicaid programs; National Institutes of Health; Research and development; Sickle Cell Awareness Month, National; Sickle cell disease, treatment and therapies.

DCPD Number: DCPD202400734.