June 18, 2024

Van Hollen, Booker, Brown, Introduce Bicameral, Bipartisan World Sickle Cell Awareness Day Resolution

Today, U.S. Senators Chirs Van Hollen (D-Md.), Cory Booker (D-N.J.), and Sherrod Brown (D-Ohio) introduced a resolution to designate June 19, 2024 as “World Sickle Cell Awareness Day” to increase public awareness about sickle cell disease and the continued need for research, early detection, and effective treatments that lead to a cure. U.S. Representatives Danny Davis (D-Ill.-12), Michael C. Burgess (R-Texas-26), and Barbara Lee (D-Calif.-12) introduced the House companion bill. 

Sickle cell disease (SCD) is a rare, inherited disorder that causes a person’s red blood cells to become deformed and get stuck in their veins, blocking oxygen flow throughout the body. In the United States, 100,000 people are affected by SCD, including 1 in every 365 African-American births, and 1 in every 16,300 Hispanic-American births. Around the world, sickle cell disease affects millions of people, particularly in some areas of sub-Saharan Africa, South and Central America, the Caribbean, South Asia, the Middle East, and the Mediterranean basin. In countries with fewer resources, more than 90 percent of children diagnosed with sickle cell disease do not live to see adulthood. Despite being the most common inherited blood disorder in our country, research, treatment, and awareness efforts for the disease still lag far behind other chronic illnesses.

“Countless Americans and their loved ones have been impacted by sickle cell disease, including a former staff member of mine, John Amara, who was taken from us far too soon. On World Sickle Cell Awareness Day, we recognize all of those who have been affected by this terrible disease – and spread understanding about the need to better treat and ultimately cure it. In honor of John’s memory, I’m committed to realizing a healthier future for today’s sickle cell warriors by fighting to boost awareness, grow the network of care, and find a cure to eliminate this disease once and for all,” said Senator Van Hollen.

“Sickle cell disease is a difficult diagnosis for anyone, but disproportionately affects communities of color,” said Senator Booker. “We know that more than 90% of people with sickle cell disease in the United States are of African descent. It is also a disease that has been historically overlooked and underfunded. While sickle cell research has increased in the past decade, the estimated life expectancy of Americans with SCD is still more than 20 years shorter than average. I’m proud to introduce a resolution that raises awareness around SCD, and reaffirms our commitment to eliminating barriers to innovative sickle cell treatments for our most vulnerable populations.”

“Sickle cell disease can lead to many medical complications – but even though millions of people around the world are affected by this disease, research, detection and treatment are too far behind,” said Senator Brown. “As a nation, we must commit ourselves to gaining a better understanding of sickle cell disease through research and develop a better treatment strategy for patients around the globe.”

“In light of the health difficulties that sickle cell disease creates for millions of individuals both in the United States and globally, it is critical that we focus on access to quality and affordable treatment(s), and cures for these individuals in our nation and around the world,” said Representative Davis.

“Sickle cell disease is America’s silent killer that has been going unnoticed for way too long and needs to be stopped immediately,” said Representative Burgess, Chair of the House Rules Committee. “In my thirty years of being a practicing physician, I have seen the lack of awareness into the research for cures and treatments of this disease. I am grateful to join my fellow members in designating June 19th as World Sickle Cell Awareness Day. It’s crucial Americans across our nation and the world develop an understanding of the sickle cell disease to prevent the loss of many more lives.”

"Sickle Cell Disease is our nation’s most commonly inherited blood disorder, affecting an estimated 100,000 Americans—with a disproportionate number being people of African descent,” said Representative Lee. “Now more than ever, we need to invest in improving awareness, detection, and treatment for this deadly disease. I'm proud to join my colleagues in recognizing June 19th as World Sickle Cell Awareness Day and encouraging greater dialogue and awareness around Sickle Cell."

To read the full text of the resolution, click here.