In-Depth: Sen. Tim Scott (R-SC) introduced this bill to fund SCD research:
"One of the pillars I base my public service on is giving a voice to the voiceless, and that is exactly what my Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act does. I am thrilled that the Senate unanimously passed my bill to ensure that we work to improve our medical understanding of this disease through enhanced data collection and public health initiatives. For far too long has this inherited disease been overshadowed in the public sphere and I am encouraged that, by the passage of it, our world-renowned medical communities will one day find a way to better treat and cure the 100,000 people across our nation who are affected."
Dr. Yutaka Niihara, CEO and founder of Emmaus Life Sciences, supports this bill:
“As a physician who has treated SCD patients for more than twenty years, I know first-hand the impact of this disease. This condition exacts a terrible toll on patients, their families and the community in terms of pain, missing school or work and hospitalizations. We are pleased to see this legislation and look forward to it being passed.”
This bill passed the Senate with an amendment by voice vote and has the support of six cosponsors, including five Democrats and one Republican. It has the support of Sick Cells, the Sickle Cell Disease Association of America, Emmaus Life Sciences, and EveryLife Foundation.
This is a companion bill to HR 2410, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act introduced on May 11, 2017 by Rep. Danny Davis (D-IL). That bill passed the House in February 2018. Since the Senate version of this bill differs from the one that was passed by the House, a second House vote is required.
Of Note: SCD is an inherited, lifelong disorder affecting nearly 100,000 Americans. Individuals with the disease produce abnormal hemoglobin, resulting in their red blood cells becoming rigid and sickle-shaped, causing them to get stuck in blood vessels and block blood and oxygen flow to the body. SCD complications include severe pain, stroke, acute chest syndrome (a condition that lowers the level of oxygen in the blood), organ damage, and in some cases, premature death. Though new approaches to managing SCD have led to improvements in diagnosis and supportive care, many people living with the disease are unable to access quality care and are limited by a lack of effective treatment options.
People with SCD require regular health maintenance through proper nutrition, good hygiene, bed rest, protection against infections, and avoidance of other stresses. Regular physician or clinic visits are needed to identify early changes in the patient’s health and ensure that they receive immediate treatment if needed — all of which require public health funding.
Summary by Lorelei Yang(Photo Credit: iStockphoto.com / Meletios Verras)