Three Thoughts About Sickle Cell Disease and Its Impact on the Lives of Black Americans
September is National Sickle Cell Awareness Month – September
As we reflect on sickle cell awareness this month, I am reminded of Tionne “T-Boz” Watkins, five-time Grammy award-winning singer-songwriter and one-third of the girl group “TLC”, actor, author and health care activist. She, in the uplifting and socially conscious spirit that was part of so many Black music artists’ identity during the ’90s hip-hop generation, wrote a memoir, A Sick Life, to inform and inspire us. The book chronicles her life with sickle cell disease and lends a voice for those with sickle cell. As a fierce advocate she knows that encouraging people to vote for their health is important. “I know firsthand the challenges families experience when it comes to accessing quality, affordable health care…When you are lying in a hospital bed, fighting for your life, fame doesn’t matter, nor can it buy you wellness. It’s why I’m proud to… share my story and help mobilize voters to the polls.”1
Image: LAUT.DE-BIOGRAPHIE
Worldwide some 7.4 million people have sickle cell disease with approximately 100,000 in the United States, 90% of them being non-Hispanic Blacks and children of the African diaspora. Sickle cell disease or sickle cell anemia is a hereditary genetic disease characterized by the presence of abnormal crescent-shaped red blood cells instead of the regular biconcave disc-shaped cells. These sickled cells stick to the walls of various blood vessels, resulting in blocked blood flow that can lead to organ damage, pain, and infections. Given today’s advancements in genetic testing in the United States, families know if their child will have the disease or the trait. This type of family planning counseling also contributes to lower numbers of sickle cell patients. Genetic physiological adaptation of the blood cells in sickle cell patients have been theorized as a protection against malaria but in reality it is felt to be a curse: a cross that families must bear while children pray to live to adulthood. “I don’t want my loved ones to feel my pain, I have to keep a normal face…” —T-Boz
Sickle Cell Disease pain is not just a symptom. Pain is the disease.
When blood cells sickle in a person, it causes severe pain that can lead to organ failure and other life-threatening complications. Treatment involves pain control and frequent blood transfusions, which can be necessary as early as infancy. Dr. Venée Tubman, director of the Sickle Cell Treatment Center at Texas Children’s, explains that as these patients grow into teenagers, they become advocates for their disease but may face challenges from uninformed medical providers. Educating medical communities about sickle cell disease is crucial for providing compassionate care to affected families.
What Sickle Patients Want From The Medical Community
In Dying in the City of the Blues, Keith Wailoo chronicles the evolution of sickle cell disease recognition and treatment. In the book, he predicts that, for policy makers, the significance of this disease would fade, along with research and funding as healthcare evolved. Despite progress in research during the ’70s and ’80s, funding has shifted towards other illnesses such as cystic fibrosis, HIV/AIDS, and COVID; leaving sickle cell disease research and treatment underfunded. Dr. Courtney Fitzhugh leads a breakthrough lab dedicated to a cure for sickle cell. Her continued clinical research work relies on critical, dedicated funding. Funding also sustains blood transfusion centers and emergency room personnel training to properly care for sickle cell patients in crisis. Patients often report being ignored and left alone, as if their pain will go away on its own. Drugs help manage their crisis, yet untrained ER professionals may not believe their pain is real and sometimes mistaken them as “drug seeking”. Sickle cell patients are not drug addicts, and measuring their pain is not as simple as a 1-10 scale rating. Their cries of crippling pain should be believed and acknowledged.
One Critical Thought: How Gun Violence Affects Medical Patients
As an anesthesiologist, I can’t help but wonder if preventable diseases such as gun violence are affecting the availability of timely blood transfusions for sickle cell patients. In cities like Philadelphia, Chicago, and Atlanta where gun violence is rampant, blood banks could be severely impacted, making availability for patients during a crisis, more vulnerable.
Sickle Cell Activism in the Culture
“We wear the mask that grins and lies that hides our teeth and shades our eyes. This debt we pay to human guile with torn and bleeding hearts we smile.” —Paul Laurence Dunbar
Black folk have always been able to tell our truth through song, dance, and storytelling. I believe when we see our real-life stories described in a song, or played out in a movie, it helps the public at large to truly see us. I remember Black actors who boldly used their craft to protest, bring awareness and memorialize Black life. If you haven’t seen A Warm December starring Sidney Poitier, I highly recommend it. The movie was released in 1973, and Poitier plays a smart and handsome doctor who falls in love with a beautiful Black woman with sickle cell disease. Just one year prior, in 1972, the National Sickle Cell Anemia Control Act was passed. This historic policy merged sickle cell disease awareness with the Civil Rights Movement in an effort to empower those who were affected by the disease. This movie was a way Black Hollywood made sickle cell relevant and relatable. Since then, the sickle cell community have advocates like T-Boz, but they are still waiting for effective policy, public health recognition, and better standardization of care protocols when seeking care.
Resources
- The Grio Interview with Tionne “T-Boz” Watkins1
- Sickle Cell Disease Statistics
- VoterER
- Healthcare Voter
Image credit: A Warm December, IMDB
Image credit: Cover image stamp, “Sickle Cell Awareness Campaign 2004 Stamp Collection”
