On June 15, U.S. Senators Chris Van Hollen (D-Md.), Cory Booker (D-N.J.), and Sherrod Brown (D-Ohio) reintroduced a resolution expressing support for the designation of June 19, 2023 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.) and Michael Burgess (R-Texas) 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, eastern Saudi Arabia, and central India. 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.
“Having lost a beloved staff member to sickle cell, the fight to end this disease is deeply personal to me. I’m committed to boosting awareness of this illness as well our federal investment in studying and treating it so we can build a future where every sickle cell patient has the chance to live a long and healthy life as we work to defeat it entirely,” said Senator Van Hollen.
“Sickle cell disease continues to be a global health concern,” said Senator Booker. “The disease disproportionately affects people of African descent and is lethal without proper medical care. We know that over 90 percent of children with sickle cell disease in regions with poor health care infrastructure do not reach adulthood. This resolution raises awareness around sickle cell disease and calls on the United States to lead the global effort to develop innovative therapeutic methods to support people living with the disease.”
“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.
“Having personally treated patients with sickle cell disease, I have witnessed its devastating impact on individuals and their families. Seeing the existing disparities in research, treatment, and awareness efforts for this prevalent blood disorder is disheartening,” said Representative Burgess.“I have worked for years to drive progress and advocate for improved resources to support those living with this disease. I am grateful to Senators Booker, Van Hollen, Brown, and Representative Davis for their support in reintroducing the ‘World Sickle Cell Awareness Day’ initiative.”
The full text of the resolution can be found here.
Original source can be found here.
