Benign Neglect of Suffering among Blacks and the Poor: Why Race-Crits and Justice Scholars should care about Regulating Stem Cells as Drugs.By
“Health is politics by other means,” is the first sentence in Alondra Nelson’s Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination (2011). This sentence echoes a certain veracity not only in the present day obstacles that continue to confront Black Americans, the poor and the ill, but also points out the multidimensional and rich considerations of the civil rights movement that are usually overlooked in favor of dogmatic recitations of equality. Today, the same racial and socio-economic inequalities like access to health care or the ability of minorities to obtain an equitable quality of treatment that were of concern to our civil rights leaders like Dr. Martin Luther King Jr. and the Black Panther Party in the 1960s, are still largely ignored in academic and policy circles alike. Unlike these past conversations that focused on the ability of Blacks, the poor and women to obtain treatment, we are currently confronted with a situation where FDA policies declaring human blood and the cells within this blood to be biologic “drugs” in need of federal regulation.
While there has already been some critical commentary on the regulatory over-reach of the FDA in declaring that “stem cells are drugs,” in Mary Ann Chirba and Stephanie M. Garfield’s “FDA Oversight of Autologous Stem Cell Therapies,” race-crits, critical sociologists, and critical theorists have not yet commented on how this denial treatment to sick and ailing patients–which not only violates one’s personal liberties, but propagates the already widening gap of pain and suffering for marginalized groups in America. While there will be any number of debates as to the effectiveness and long term safety of adult mesenchymal stem cells for years to come, early clinical studies have shown positive results—namely the decrease of pain, the increase of knee cartilage, and the improved functionality of joints. (See S. Wakitani et al., “Safety of Autologous Bone Marrow-derived Mesenchymal Stem Cell Transplantation for Cartilage Repair in 41 Patients with 45 Joints Followed for up to 11 Years and 5 Months,” Journal of Tissue Engineering and Regenerative Medicine 5.2 : 146-150). Beyond the clinical efficacy of said treatments, there remains a central concern raised by Patricia A. King in “Justice Beyond Belmont,” that is often overlooked in addressing healthcare disparities amongst the most vulnerable populations in America—namely do these groups have the same right to innovative medical treatments that show promise in decreasing their pain and suffering as the privileged?
The FDA’s argument for Regulating Adult Mesenchymal Stem Cells and the Slippery Slope towards an Indifference of Pain
What we are dealing with today is the attempt of a federal entity to extend its power over human bodies and the blood and blood products of those bodies under the auspices of its obligation to protect public safety. Remember the idea that stem cells could be regulated as drugs is the result of a procedural change in 21 CFR 1271 in 2006. The relevant section of that document currently states that:
[h]uman cells, tissues, or cellular or tissue-based products (HCT/Ps) means articles containing or consisting of human cells or tissues that are intended for implantation, transplantation, infusion, or transfer into a human recipient.
Before 2006, the bolded section here stated “another human recipient.” This legalese now gives the FDA an unbridled authority to regulate blood and blood/tissue products that do or could be used therapeutically in the human body. While the legal debate is concerned with the parameters of “minimal manipulation,” the societal effects of such indeterminate language opens the door to any number of FDA regulatory claims of human blood and cell products without clear guidelines and delineations as to the how or why human bodies and the blood and blood products of these bodies are subject to government oversight.
This is a dangerous precedent and one whose larger social, political and ethical implications have been overshadowed by the deliberate manufacturing of a looming public safety catastrophe from therapies involving stem cell treatments. If we read this procedural change in the context of the Regenerative Sciences case, and the recent attempts of the FDA to regulate the reproductive freedoms of consenting adults in America, we can observe a frightening pattern of government encroachment on individual freedoms and our civil rights—those rights that are supposed to protect American citizens from government intervention in their private lives. What is of even more concern for the civil rights minded and social justice oriented is how this small governmental regulation can amplify already disparate and racially determined healthcare treatment and failure of meaning pain intervention in racial and ethnic minorities’ lives.
Racism, Economic Exploitation and the Ethical Significance of Pain and Suffering
Poverty and the lives of the injured working class are filled with complex dissonances meant to deny the effects of disability and chronic pain to remain employed and economically viable. (Irmo Marini “The Psycho-Social World of the Injured Worker,” in Psychosocial Aspects of Disability: Insider Perspectives and Strategies for Counselors [New York: Springer Publishing, 2012], 287-314.) This effect is only amplified when we speak to race and racism in the healthcare system. As Carmen Green et. al. argue in “The Unequal Burden of Pain: Confronting Racial and Ethnic Disparities in Pain,” racial minorities experience more severe pain and less pain intervention by physicians throughout the healthcare system. (Pain Medicine 4.3 : 277-294.) As a group, African Americans are more emotionally and psychically tied to pain (Joseph Riley et al. “Racial/ethnic differences in the experience of chronic pain,” Pain 100.3 :291-298), but less likely to pursue medical treatments to intervene in cases of arthritis or other orthopedic ailments. In short, they don’t want to be cut on (Joanne M. Jordan, “Prevalence of knee symptoms and radiographic and symptomatic knee osteoarthritis in African Americans and Caucasians: the Johnston County Osteoarthritis Project,” The Journal of Rheumatology 34.1 : 172-180.)
This is not simply an issue of disparate access to treatment, but the deliberate regulative intervention that suggests that pain and suffering can be concentrated amongst specific racial/ethnic and socioeconomic groups without hesitation. Just as we think of racism and economic exploitation as the intentional dehumanization of human beings, so to should we begin to think of pain and suffering as the vacating of humanity the unhealthy socially marginalized minority. As Edwin Lisson powerfully states in his 1987 article “Ethical Issues Related to Pain Control,”
pain is dehumanizing. The severer the pain, the more it overshadows the patient’s intelligence. All she or he can think about is pain, there is no past pain free memory, no pain free future, only the pain-filled present. Pain destroys autonomy: the patient is afraid to make the slightest movement. All choices are focused on either relieving the present pain or preventing future pain, and for this one will sell one’s soul.
Currently, there is not a bioethical conversation concerning the benign neglect of the oppressed’s suffering through the manipulation of medical disparity.
While the emphasis on intersectionality and discourse analysis have continued to privilege individual identity over structure, so to have these politics overlooked the overt manipulation of policy against racial/ethnic/ and economically disadvantaged folks. The overlap between the economic and racial segregation of urban African Americans and their experience of chronic pain suggests that the silence of race-crits and social justice scholars in this area, specifically concerning FDA regulations, is unjustified. The reduction of pain and suffering amongst the racially oppressed remains as it was in the 1960’s a very real and tangible civil rights issue. We only ignore this reality at the peril of our work and attempt to effect meaningful social change.
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