Black History Month—February 2018
Sick Cells is proud to celebrate Black History Month. During Black History Month 2018, Sick Cells honored #FacesOfSCD that have moved the community forward throughout history. We're proud to share the stories below to increase awareness on the history of sickle cell disease and spark change for the future.
Albert Johnson, AKA Prodigy
Prodigy, who was part of rap duo Mobb Deep, passed on June 20, 2017. The rapper often spoke about the psychological and physical battles he faced with sickle cell. In his pain, Prodigy believed having sickle cell ultimately led him to focus more on his health. “It made me a better business person, having sickle cell. And it also stopped me from destroying my body with drugs and alcohol and all that. It’s like a domino effect. That caused me to be a better person because when you take care of your health, you start looking at life different. And you start looking at people different. And your actions and your thoughts different.”
Black Panther Party
Our Black History Month series continues with the Black Panther Party — “When donors visited the Black Panther Party, they came and saw our real programs, a real clinic, with real doctors and medics, giving service to people.” - Bobby Seale, Co-Founder of the Black Panther Party.
The Black Panther Party worked endlessly to educate the community about #SCD. Throughout the United States, the party held screenings for sickle cell and sickle cell trait. Further, they created the People's Sickle Cell Anemia Foundation to begin research that was in the best interest of the Black community. Together, they truly helped raised awareness for #sicklecell. [📸: Stanford University]
Our Black History Month series continues with Tionne Watkins. “I was told I wouldn’t live past 30 or have kids.” Tionne ‘T-Boz’ Watkins, 47, is a member of the 90s female group TLC. In 1996, after much success with TLC, T-Boz went public with her sickle cell anemia. Doctors told that the disease would prevent her from having children and even touring. Today, T-Boz has a 17-year-old daughter and 2-year-old son 🙌🏾 and continues to tour and perform. She’s served as a spokesperson for the Sickle Cell Disease Association of America, written a memoir titled “A Sick Life: TLC’n Me: Stories from On and Off the Stage”, and hosts an annual benefit concert for #SCD called T-boz Unplugged! #FacesOfSCD [📸: The Boombox]
Baby Hug Clinical Trials
Thanks to over 100 Black families that enrolled their babies in the Baby Hug hydroxyurea clinical trial, thousands of other sickle cell children have access to this life-saving medication. Hydroxyurea has been in use, off label, for over a decade in children with sickle cell disease. On December 21, 2017, the FDA approved hydroxyurea in pediatrics with SCD based off of European and US data. In the US, the study to aid in the approval is called the Pediatric Hydroxyurea Phase 3 Clinical Trial also known as the Baby Hug study.
Over 100 families enrolled their infants, ages 9 months to 18 months, and stayed on the study for almost 13 years. 96% of the patients were Black. Hydroxyurea is now FDA approved, covered by insurance, available in liquid form, medically understood, and widely used for all children, regardless of race, with sickle cell disease.
Thank you, to all the Baby Hug families that made the choice to get involved with research. Their dedication to science advanced the care for everyone with sickle cell disease. [📸: Sickle Cell Disease - What is New by Miguel R. Abboud, American University of Beirut Medical Center and Children’s Cancer Center of Lebanon, Beirut]
Affordable Care Act:
After 44th U.S. President, Barack Obama passed the Afford in 2010, the ACA worked to improve access to healthcare and utilization for those living with chronic and pre-existing conditions, like sickle cell disease. Under the ACA, patients with SCD were no longer allowed to be denied insurance coverage. Additionally, under the ACA, the Medicaid expansion afforded millions of Americans access to insurance. Additionally, those living with SCD and other conditions had access to preventative services such as pneumonia and influenza vaccines at no additional cost. Former President Barack Obama and his Affordable Care Act (ACA) started the process for a higher quality of care for many Americans and created protections for many with chronic diseases like SCD.
Walter Clement Noel
Our Black History Month series continues with Walter Clement Noel (1884-1916), the first person on record in Western medicine to be diagnosed with sickle cell anemia. Noel was born in Grenada, a small Caribbean island. He left Grenada to study dentistry in Barbados and then the U.S. Upon Noel's arrival to New York City, he had experienced sickle cell-type symptoms (i.e., leg ulcers, pain in his limbs, shortness of breath). He was examined by an intern, Dr. Ernest E. Irons, who recognized abnormalities in Noel's blood cell shapes. His case was studied for several more years by Dr. James B. Herrick. In 1910, six years before Noel's death, Dr. Herrick, assisted by Dr. Irons, published an article describing “peculiar elongated and sickle-shaped red blood corpuscles in a case of severe anemia”. The patient he was describing was Noel, making him the first recognized person to be diagnosed with sickle cell anemia. Today, much more is known about and its cause, but we continue to raise awareness and advocate for increased funding for research and treatments, as well as adequate health care policies. [The Caribbean Current] 📸: University of Michigan School of Public Health Frontlines Blog