An Open Letter in Support of Sickle Cell Disease Communities
To the Sickle Cell Disease (SCD) communities, including warriors and caregivers.
We care about you.
We affirm that your lives are valuable.
We must do everything in our power to educate our communities and address the inequities that exist throughout the sickle cell disease care continuum.
Despite impacting millions of people worldwide and being the most common inherited blood disorder in the United States, many people are still unfamiliar with sickle cell disease. SCD is a chronic, debilitating condition that predominantly impacts those of Black and Hispanic descent and many demographics which have historically been overlooked by the health system. In the United States, one in 13 Black people and approximately one in 100 Hispanic people carry the gene for SCD. As a community, people with SCD experience worse health outcomes, with a life expectancy roughly 30 years shorter than the average American.
September is Sickle Cell Awareness Month, an opportunity to bring caregivers, advocates, and all those in the healthcare industry together to raise awareness of the disease, dispelling stigmas and highlighting the need for continued research for advanced treatments and better care for the SCD community. We start by raising public consciousness of the impact and the need for better education to ensure the medical community can detect sickle cell disease signs and symptoms. SCD is a complex, multifaced disorder that presents differently in each person. However, the most consistent clinical feature of the disease is severe pain, which can occur anywhere in the body and last from several days to several weeks. And yet we acknowledge that sickle cell is more than pain—that it affects you every day, with or without pain, in a variety of ways.
As a part of America's Black health industry leaders, we recognize the medical community's role in racial justice and equity. We are calling on all Black and Hispanic communities to stand up as Champions for those impacted by SCD.
With no cure and limited treatment options, patients often head to the emergency department for care.
Several factors in emergency care present challenges for providing the best care to the sickle cell disease community. And bridging the educational gap and bias among HCPs is one of the first and most vital steps we can take to make a lasting, positive impact. There are currently limited HCPs trained specifically in SCD. Due to the varied and continuous complications associated with SCD, barriers to proper care are extensive—with people living with the disease experiencing the highest hospital return rate within 30 days compared to other health conditions. Those return visits can cause a series of added difficulties, including misconceptions of pain severity and concerns about opioid dependency. Delays in treatment can lead to dangerous outcomes and prolonged trauma.
Our healthcare system reflects the biases in our society. Racial inequities in care are evident in the SCD community, where patients are too often marginalized and dismissed while searching for the most basic medical care they need and deserve. While there are currently legislative efforts to establish programs focused on increased treatment and care for people living with SCD, incentivize more SCD-specialized HCPs, and provide widespread education on the disease, there is still much to be done to support progress and raise awareness of these initiatives.
We are dedicated to supporting the Black and Hispanic communities, and in partnership with Pfizer, we are committed to changing the future of care for the SCD community, bridging the education gap regarding SCD and the need for progress. As industry leaders, it is our responsibility to speak up for underserved communities and inspire change.
With our care,
Bert Bruce, US President, Rare Disease, Pfizer
Kim Smith-Whitley, MD, Advisor of Scientific & Clinical Affairs Global Chief Medical Affairs Officer for Patient Advocacy and External Collaboration, Pfizer; Board Member, Sickle Cell Disease Association of America (SCDAA)
Regina Hartfield, President and CEO, Sickle Cell Disease Association of America (SCDAA)
Jason Payne, MD, MSPH, FAAP, Assistant Professor—Pediatric Hematology/Oncology Morehouse School of Medicine
James G. Taylor, MD, Professor, Internal Medicine & Director, Center for Sickle Cell Disease, Howard University College of Medicine
Sacha Choupa, Medical Student, Sickle Cell Disease Researcher, Meharry Medical College
Torhiana Haydel, Student National Medical Association—Health Policy & Legislative Affairs Co-Chair
Karina Wang, Student National Medical Association—Health Policy & Legislative Affairs Co-Chair
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