Shining the sickle cell spotlight on Oakland, California, reveals a rich history of activism, medicine, and commitment that began in the 1960’s and continues into the twenty-first century. In 2016, the Northern California Comprehensive Sickle Cell Center at Children’s Hospital & Research Center Oakland (now UCSF Benioff Children’s Hospital Oakland) remains the epi-center for sickle cell treatment and research serving the San Francisco Bay area and surrounding region in Northern California.
This world-class sickle cell center developed in the dynamic and often turbulent environment of the 1960’s civil rights movement. In Oakland, the atmosphere of political activism was especially charged due to the presence of the Black Panther Party (BPP), which began in Oakland, and established sickle cell screening programs there in the early 1970’s. The BPP set up the Sickle Cell Anemia Research Foundation to draw attention to sickle cell disease as a hemoglobinopathy that primarily affected individuals of African descent. Their aim was two-fold, first to test for sickle cell disease and trait, bring attention to the lack of medical research on sickle cell, and find a cure for the disease; second, to demonstrate the extreme health disparities affecting African Americans in Oakland and throughout the country. The BPP, with Dr. Tolbert J. Small playing a leading role, established the George Jackson Free Health Clinic in nearby Berkeley. The clinic provided free health services, including sickle cell testing, and became a model for free clinics in other American cities. BPP sickle cell screening programs built solidarity in the African American community, introduced the nation to sickle cell disease, informed thousands of their sickle cell status, and drew attention the crucial lack of health care services available in minority communities.
By 1971 President Richard Nixon had taken notice and deemed sickle cell anemia a critical area for urgent investment under his National Health Strategy and mass sickle cell screenings began to be implemented by hospitals, counties, states, and corporations. Nevertheless, mass testing for sickle cell soon drew harsh criticism, especially from Dr. James Bowman, Professor of Medicine and Pathology at the University of Chicago. Bowman, who had been the first African American resident at the University of Chicago, argued in 1972 that mass sickle cell screening was “more harmful than beneficial.” He denounced the conflation of sickle cell anemia (the disease) with sickle cell trait (carrier state) and warned that the rush to pass mandatory screening laws in many states could “revive many of the past misadventures and racism of eugenics movements.”
At that time, Bertram H. Lubin, MD, founder of the Children’s Hospital Oakland Research Institute (CHORI) and now CEO of UCSF Benioff Children’s Hospital Oakland, was new to the Oakland area. He would soon become co-director of the Northern California Comprehensive Sickle Cell Center. Lubin remembered thinking, “[t]his is nice, a community group doing screening . . . but there was no informed consent, and people who tested positive didn’t know if they had disease or trait.” Lubin never forgot Bowman’s fury and outrage over the way sickle cell screening was being implemented, both by volunteer groups and by state health agencies. Over the past four decades, Lubin, whose devotion to Children’s Hospital Oakland is legendary, has played a crucial role in building outstanding sickle cell programs in the city and surrounding areas, both clinically and in terms of research.
While Lubin was following James Bowman’s lead in his hematology research and practice, Dr. Troy Duster, grandson of social critic Ida Wells-Barnett and a rising young sociologist, was processing Bowman’s critiques and warnings about the unintended consequences of genetic screening from a different perspective. Duster, who joined the faculty at University of California, Berkeley, in 1967 and is now the Chancellor’s Professor at the Warren Institute on Law and Social Policy, broke new ground in exploring the social and cultural implications of genetics, race, and biology. Over the decades he has trained a new generation of leading scholars in bioethics and medical humanities, including Dr. Alondra Nelson, Dr. Duana Fullwiley, and Dr. Ruha Benjamin, whose cutting edge work continues to probe the nexus between biology and race, politics, science and society.
Almost half a century after the Black Panther Party first mobilized the community to address the impact of sickle cell disease and massive health disparities, care for children and adults with sickle cell disease and trait the Northern California Comprehensive Sickle Cell Center at Children’s Hospital Oakland, founded in 1978, delivers the highest standards of care in the field and has been a national and international leader in sickle cell research. For many years, the Northern California Comprehensive Sickle Cell Center and its research partner, the Sickle Cell Disease & Thalassemia Center at the Children’s Hospital Oakland Research Institute (CHORI), were consistently funded by NIH as one of ten Comprehensive Sickle Cell Centers in the country until the NIH eliminated the program in 2007.
Dr. Lubin organized CHORI, the Children’s Hospital Oakland Research Institute (CHORI), now recognized as one of the world’s leading pediatric research centers in 1986. CHORI has a team of more than 200 scientists and fellows and is engaged in hundreds of clinical trials in the areas of hematology, immunobiology, infectious disease prevention, oncology, nutrition, cardiovascular disease and diabetes, as well as genetics and genomics. In 2009, the Northern California Network of Care for Sickle Cell Disease, based at the Comprehensive Sickle Cell Center, became one of two national sites selected by the Health Resources and Services Administration´s (HRSA) to study the health care experiences of people with SCD, and test out different ways to improve those experiences.
Children’s Hospital Oakland merged with the Benioff Children’s Hospital of the University of California at San Francisco in 2014 and is now known at UCSF Benioff Children’s Hospital Oakland. The Northern California Comprehensive Sickle Cell Center remains the largest and most comprehensive sickle cell program in the Western United States. It has made major contributions to sickle cell clinical care and research, and has been on the vanguard in developing bone marrow transplantation as a curative therapy for sickle cell disease. In addition to Dr. Lubin, Dr. Elliot Vichinsky, Dr. Mark Walters, and Dr. Marsha Treadwell been national leaders in sickle cell research.
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West, C. (2010). The Black Panther Party: service to the people programs. D. Hilliard (Ed.). UNM Press.
Nelson, A. (2011). Body and soul: The Black Panther Party and the fight against medical discrimination. U of Minnesota Press.
Benjamin, R. (2013). People’s science: Bodies and rights on the stem cell frontier. Stanford University Press.
Ross, M. (2012, December 21). 100 years of healing.The Man in Charge. Diablo Magazine. http://www.diablomag.com/January-2013/100-Years-of-Healing.