Sickle Cell Disease Partnership members

“Over 100,000 people in the United States live with sickle cell disease, but the number impacted by it is much higher. Sickle cell warriors feel the pain, but their communities hurt with them. We call on our policymakers to address sickle cell knowing that taking action won’t just change our warriors lives – it will change the lives of all the people connected to them. The time is now to step up for sickle cell.”

“The American Academy of Pediatrics believes all children with sickle cell disease deserve the highest quality primary and specialty care. It is vital that leaders institute policies and initiatives in alignment with the National Academies of Sciences, Engineering, and Medicine’s report to reduce health care disparities affecting people with sickle cell disease, and we must collaborate with communities to develop innovative approaches to reduce the impact of sickle cell disease on the health and well-being of children and families.”

“Preventive treatments for the pain crises and chronic anemia due to Sickle Cell Disease have become more prevalent and innovative in our generation. To make treatments accessible to all Americans with this disease, policymakers must confront existing disparities facing the Sickle Cell Disease community and respond by adopting innovative policy approaches.”

“The time is now to improve outcomes and address historic inequities for people living with Sickle Cell Disease. The Partnership will build support for proven policy recommendations as we help drive innovation and investment in research to support promising therapies to treat and cure Sickle Cell Disease.”

“The American Society of Hematology (ASH) is pleased to be part of the Sickle Cell Disease (SCD) Partnership, which aligns with the Society’s long-time commitment to improve outcomes for individuals living with SCD. In 2015, ASH launched a transformative, multi-faceted, patient-centric initiative to address the burden of SCD world-wide. Our efforts include improving patient access to care, advancing research to bring more and better treatments to patients, and sharing educational and counselling materials with patients and their families. ASH administers the Sickle Cell Disease Coalition, which includes over 100 member groups that work together to improve coordination across the SCD community. This Partnership complements ASH’s ongoing focus and leadership in SCD advocacy, and serves as a helpful platform for coordinated action to raise awareness for SCD, increase resources for federal SCD programs, and improve access to high-quality comprehensive care for individuals with SCD.”

Wunmi Bakare was 18 months old when her pediatrician, Dorothy Esangbedo, M.D., diagnosed her sickle cell disease. Too young to understand her condition, the questions—“what is it?”, “how did it happen?”, and the heartbreaking “why me?”—came much later. Then this realization: In her native Nigeria “sickle cell is deemed a social stigma,” Bakare said. “So, patients and families don’t disclose this medical diagnosis, fearing judgment or mistreatment.” Growing up with sickle cell disease, she became very skilled at juggling school and extracurricular activities, and at 15, she gained admission to the University of Texas at Austinexternal link, from where she graduated with honors. “My parents raised me to be independent and self-sufficient, so coming to the US as a teenager wasn’t scary or challenging,” she said.