Abstract

Excerpted From: Sonora Windermere, The Medical and Legal Plight of Sickle Cell Patients:  A Case Study of Racial Disparities in Health Care and the Potential Legal Remedies, 21 Indiana Health Law Review 83 (2024) (187 Footnotes) (Full Document)

Sickle cell disease (SCD) is an inherited blood disorder that afflicts 100,000 Americans and is predominantly found in people of African and Mediterranean descent. SCD is also the most common genetic disease in the US, as 1 in 12 African Americans carry the autosomal recessive mutation on one allele, and 1 in 500 African Americans are born with the disease due to inheritance of two mutated alleles. The sickle cell mutation causes red blood cells to “sickle” and clump when partially depleted of oxygen causing the clots and subsequent ischemia that instigate the various SCD syndromes. The numerous SCD syndromes include ischemic (venous stasis) leg ulcers, avascular necrosis of the hip, shoulder, or knee, cholecystitis or gallbladder colic, priapism, headache, and gout. However, the lifelong and unpredictable vaso-occlusive crisis pain which most necessitates consistent management, also makes SCD treatment so problematic. Opioid analgesics are the well-established treatment for SCD, and there is no ethical controversy in administering opioids to SCD patients experiencing acute pain. Early intervention with fluids and opioids is very important, because aborting VOC pain can prevent extensive tissue damage. Nevertheless, despite all the evidence supporting treatment with opioids, SCD patients are often refused long-term pain management or are prescribed medications with lower efficacy than opioids. Unfortunately, there is no quick fix to this problem because SCD patients not receiving the care they need due to numerous impeding factors.

Section 1 of this paper discusses the issues driving health care disparities and inequities in patients with SCD, including issues of past and present racial bias along with the deficient evidence driving health policy. Section 2 discusses the potential legal remedies SCD patients can seek when failed by the health care system. Finally, Section 3 looks at the different ways these injustices can be prevented, by improving training for health providers, evaluating newer treatment options, and changing the standard by which physicians are judged, thus incentivizing active participation in the process toward system wide improvement.

[. . .]

Lastly, the medical profession's standard of care needs to evolve to recognize the harmful effects of factoring race into medical decisions. The apparent lack of consensus as the scientific irrelevance of race has allowed racialized research to continue, has emboldened some physicians to discriminate and enabled others to exercise unconscious bias without any legal accountability. The Department of Health and Human Services has failed to enforce regulations against disparate impacts in the health care leaving Black patients to suffer from discrimination in addition to their medical conditions until their mistreatment rises to the level of clear medical malpractice or intentional discrimination.

It is uncertain whether these issues should first be attacked by the medical or the legal community. While it is also unclear whether a joint approach to tackling racial disparities in health care would prove successful, it is clear that current adversarial relationships between medical and legal professionals only further hinder progress. When doctors fear malpractice liability for over-prescribing, they either tend to under-treat or they refuse to satisfy the requirements to prescribe and thus avoid treating patients presenting with pain altogether. Legislators may recognize the opioid crisis as one of monumental importance but miss the need for a greater understanding of the scientific complexities of opioid action and responsible prescribing practices. Along either well-intentioned path, patients and particularly Black SCD patients receive lower quality care and thus needlessly suffer further.

M.D., J.D. Graduate 2021, University of Florida Colleges of Medicine and Law, now completing her surgical training at Shands Hospital in Gainesville, FL.