A new phase II clinical trial showed that Crizanlizumab (SEG101), an anti-P-selectin antibody, reduced the rate of Sickle cell disease (SCD) related pain crises compared to placebo. This new medication has the potential to be the most significant therapeutic advance in sickle cell disease in nearly 20 years. The results were presented at the American Society of Hematology in San Diego, and published online on December 3rd, 2016 in the New England Journal of Medicine. This is great news for patients afflicted with the disease, which historically has been underfunded, an issue brought to the forefront by the Black Panther Party (BPP) over 45 years ago.
The BPP leveraged their political power to draw attention, awareness, and ultimately millions of dollars in research funds for SCD. This accomplishment stands as one of the less appreciated, but more remarkable achievements of the organization. By 1970, Bobby Seale, one of the leaders of the BPP, mandated that chapters develop free clinics, called the People’s Free Medical Centers (PFMC), to ensure safety and survival of BPP members and their communities. 1 These free clinics provided services such as testing for high blood pressure, diabetes, screening for cancer, and routine immunization. Many clinics also routinely screened people for SCD. The BPP claimed to have screened and educated tens of thousand nationwide.
The emphasis placed on SCD by the BPP brought a significant amount of attention to the disease. In 1971, the National Association for Sickle Cell Disease (now Sickle Cell Disease Association of America) was founded. In that same year, noting the shameful neglect of SCD, President Richard Nixon pledged millions of dollars from Congress to combat SCD. In 1972, the National Sickle Cell Anemia Control Act passed, allocating tens of millions of dollars for SCD research funding and prevention. 2 The government buy-in, while a notable accomplishment, ultimately resulted in a diminished role for the BPP in its efforts to combat the disease and raise awareness.
A genetically inherited blood disorder, SCD disproportionately affects black Americans. Despite its significance as the first disease understood at the molecular level in 1949, there remains no cure, nor has there been a new FDA approved medication since 1998. 3,4 Whereas cystic fibrosis, a more rare genetic disorder, which mostly affects Caucasians, has had several approved drugs since 2010 alone. Funding per person affected is more than 10 times greater for cystic fibrosis then for SCD. 5 This type of disparity in biomedical research funding and progress is multifactorial, but many of these factors such as access, financing, and political power are mediated by race.
The advocacy work of the BPP demonstrates the importance of community activism in addressing the structural inequities inherent in the biomedical-industrial complex, which continues to perpetual unequal outcomes for blacks. 6 The Panthers’ commitment to public health advocacy also highlights the extent of mistrust black Americans have of the health care system and its long history of abuse, torture, and experimentation on black bodies. In fact, this mistrust was laid bare by the revelation in 1972 that for 40 years blacks infected with syphilis were purposefully left untreated so that the U.S. Public Health Service could study the natural progression of the disease. 7 The government could not be trusted, so PFMCs filled that void.
The Panthers astutely recognized a fundamental problem with the health care system; it is built by the same society that systematically subjugates black people. The paternalistic, capitalist, and racist sensibilities of the biomedical-industrial complex were simply a mirror of American society. As a result, in order to ensure the health of the community, PFMCs were necessary. Few of the original PFMCs survived very long; however, community health centers continue to play an important part of health care today. In particular, they have become important in states that have not expanded Medicaid as part of the Affordable Care Act (also known as Obamacare). A majority black Americans and by extension those with SCD live in these non-expansion states. 8
The BPP’s commitment to community health and advocacy remains a little discussed but important part of their legacy. For me, as a physician and public health/policy researcher, this history is a reminder of the importance of grass roots activism and political engagement to get public and private investment into public health causes to improve community health.
1. Nelson A. Body and soul : the Black Panther Party and the fight against medical discrimination. Minneapolis; London: University of Minnesota Press; 2011.
2. Bonds DR. Three decades of innovation in the management of sickle cell disease: the road to understanding the sickle cell disease clinical phenotype. Blood Rev. 2005;19(2):99-110.
3. Pauling L, Itano HA, et al. Sickle cell anemia a molecular disease. Science. 1949;110(2865):543-548.
4. Lanzkron S, Strouse JJ, Wilson R, et al. Systematic review: Hydroxyurea for the treatment of adults with sickle cell disease. Ann Intern Med. 2008;148(12):939-955.
5. Lobner K, Lanzkron S, MHS, Haywood C. NIH and National Foundation Expenditures For Sickle Cell Disease and Cystic Fibrosis Are Associated With Pubmed Publications and FDA Approvals. Blood. 2013;122(21):1739-1739.
6. McGuire TG, Alegria M, Cook BL, Wells KB, Zaslavsky AM. Implementing the Institute of Medicine definition of disparities: an application to mental health care. Health Serv Res. 2006;41(5):1979-2005.
7. Cobb WM. The Tuskegee syphilis study. J Natl Med Assoc. 1973;65(4):345-348.
8. Hassell KL. Population estimates of sickle cell disease in the U.S. Am J Prev Med. 2010;38(4 Suppl):S512-521.