All articles tagged with #sickle cell anemia
A 12-year-old with sickle cell anemia became the first person to receive a new gene therapy treatment, which researchers are cautiously calling a potential "cure." While the process is painful, expensive, and still uncertain, it marks a significant advancement in treating the disease.
The FDA has approved the first gene therapies, Casgevy and Lyfgenia, for sickle cell anemia. Casgevy, which utilizes the CRISPR gene editing tool, will cost $2.2 million, while Lyfgenia will cost $3.1 million. These treatments offer potential cures for the disease by modifying and transplanting blood stem cells. However, the high cost raises concerns about accessibility for patients, despite the potential benefits.
The mother of an 8-year-old girl who died in US immigration custody in Texas last month requested an ambulance or hospital-level medical care for her daughter multiple times, but was denied by a nurse practitioner contracted with US Customs and Border Protection. The girl eventually died in a hospital on May 17, eight days after being taken into custody by CBP. The agency's Office of Professional Responsibility is investigating the child's death and found that none of the medical personnel knew she had sickle cell anemia and a history of congenital heart disease.
The mother of an 8-year-old girl who died in US Border Patrol custody in Texas said officials ignored repeated pleas from her family to hospitalize the girl, who had existing health problems and was experiencing pain and difficulty breathing. The girl, Anadith Tanay Reyes Alvarez, died Wednesday. She was from Panama and was traveling with her parents, who were from Honduras, and two older siblings. The girl's mother, Mabel Alvarez Benedicks, said agents knew the girl had a history of sickle cell anemia and heart problems, including an operation three years ago.