Racism in America Sickle Cell

So what's all the fuss about Sickle Cell Disease (SCD) being on the map now? Well we are less than two months away from the election so that may have something to do with it. The White House recently elevated the importance of SCD as a health issue and President Trump issued a Presidential Proclamation on August 31, 2020 to that effect. September is National Sickle Cell Awareness Month. And on this past Monday, September 14, 2020 First Lady Melania Trump hosted a White House roundtable discussion: "Improving the Lives of Americans with Sickle Cell Disease," in recognition of National Sickle Cell Awareness Month. The event was held in the State Dining Room and broadcast live at whitehouse.gov. Attendees included several individuals living with SCD along with their parents and/or caregivers as well as several young and older adults living with Sickle Cell Disease. The roundtable was highlighted by testimonials from attendees. On September 10, 2020 the National Academies of Sciences, Engineering, and Medicine issued a 600 page report that provides a blueprint and eight overarching strategies for improving health care for people in the United States living with SCD. It recommends medical and social supports to ensure a safe transition from pediatric to adult care; metrics to assess the quality of SCD care; and new payment models for currently available and pipeline treatments. The report entitled "Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action," calls for the National Institutes of Health (NIH) to fund research on non-opiate and palliative pain management approaches. Back in September 2018, the National Institutes of Health (NIH) launched an initiative to accelerate genetic therapies to cure Sickle Cell Disease. The Cure Sickle Cell Initiative seeks to develop cures for a far broader group of individuals with SCD and is initially focusing on gene therapies that modify the patient's own hematopoietic stem cells which make red and other blood cells. And in December of 2018, President Trump signed the bipartisan Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act reauthorizing a current sickle cell disease prevention and treatment program for nearly $5 million each year over the next five years. Sickle Cell Disease is a group of inherited (genetic) disorders of hemoglobin. Hemoglobin moves oxygen throughout our bodies. The first one of these diseases, Sickle Cell Anemia was discovered in this country 110 years ago although it had been here centuries before that. It came with slavery from Africa. It is a chronic vascular disease with many acute and chronic complications generally marked by excruciating pain brought on by blockages in small blood vessels. People with SCD have less hemoglobin as a result of sickle cells that don't last long causing anemia; and sickle blood moves less oxygen to the many parts of the body where it is needed. Virtually every part of a person's body is affected. People are living longer than ever with SCD; however, they very often are also living sicker. Indeed, people are still dying from this disease, here and across the world.