A Black woman with natural hair, looking off into the distance, wearing blood-red lipstick and a red shirt.
Image credit: Thought Catalog on Unsplash

This October, the Food and Drug Administration (FDA) announced it would review a new experimental gene therapy treatment for sickle cell disease. This severe, painful, and potentially life-threatening inherited blood disorder affects some 100,000—primarily Black—Americans.

“There may be no population [of] patients whose health care and outcomes are more affected by racism.”The encouraging news, however, also serves as a reminder of the complex and deeply problematic history of sickle cell disease (SCD) in America—a history of racialized and disparate healthcare for Black Americans.

“There may be no population [of] patients whose health care and outcomes are more affected by racism than those with sickle cell disease,” write Alexandra Power-Hayes, MD, and Patrick T. McGann, MD, in a 2020 paper for the New England Journal of Medicine, “When Actions Speak Louder Than Words: Racism and Sickle Cell Disease.” 

Citing a substantial body of research, the authors argue that racism—structural, interpersonal, or otherwise—has affected and, indeed, shaped virtually every aspect of SCD, from treatment to research.

Research on SCD has been chronically underfunded for decades, while similar diseases that affect primarily White Americans, such as cystic fibrosis, received as much as 10 times the funding. The FDA has approved just four medications for SCD compared to 15 for cystic fibrosis (2). 

Meanwhile, Black patients seeking care for SCD face all manner of medical and interpersonal racism, including stigmatization, a failure to appreciate or believe in their pain, and even accusations of being drug seekers (3). 

Research on sickle cell disease has been chronically underfunded.

As a relatively common American disease and a global disorder “affecting people of all races,” the fact that nearly all American patients are Black would be “mere medical trivia if we did not live in such a highly racialized society.” 

But we do live in a highly racialized society. As the authors write, “Medicine is a mirror for racial injustice in our society; it is a field riddled with racial disparities in everything from research funding to patient care to life expectancy.” And that fact has profound implications for those Black Americans afflicted with SCD.

“Unfortunately, the social construct of race in America requires the majority of patients with SCD not only to face the consequences of a serious health condition,” the article states, “but also to navigate a society in which the color of their skin is often an unfair disadvantage.”

A Disparities Disease 

“Medicine is a mirror for racial injustice in our society.”

Such points have been made by a much broader field of healthcare academics and professionals, who see in SCD and its treatment thus far all the indicators of a healthcare system susceptible to racism.

“SCD has been officially declared a ‘disparities’ disease, worthy of targeted federal, state, and community intervention, by federal authorities,” note Wally R. Smith, MD; Cecilia Valrie, PhD; and India Sisler, MD, authors of the paper “Structural Racism and Impact on Sickle Cell Disease: Sickle Cell Lives Matter.”

As a “disparities” disease, the authors write that SCD “often affects individuals in the lower socioeconomic strata in the United States. Its sufferers share attributes including race, severe chronic pain, organ failure, poor functional status, physician mistrust, and social stigma associated with the disease.”

“It is no wonder that Patients with SCD have endured decades of oppression and poor care,” the authors add, “failing so far to benefit from a scientific bonanza of discoveries, such as the genetic revolution from the 90s onward, or the preceding 60s–80s financial boon of the biomedical–industrial complex and molecular medicine.”

The authors conclude, “Patients with SCD remain vulnerable in the US health care system. It will take the work of dismantling systems of power and racism that have resulted in long-standing SCD health disparities to prove that America believes that Sickle Cell Lives Matter.”

A Call to Action On SCD

The articles cited were written before the recent news of a possible new gene therapy for SCD—but that only makes the authors’ calls for reform all the more salient now, as patients may soon be approaching the US medical system with new cause for hope. 

“Our hospitals and clinics must be safe spaces for patients with SCD,” Power-Hayes and McGann write, noting the many ways that it’s not just what treatment is available but how patients are treated that contributes to the poor state of care for those with SCD. 

The authors also offer recommendations for reforms: 

  • Reduce the impact of structural racism on patients with SCD, including renewing funding for SCD research and funding analysis of the effects of racism on such research historically. 
  • Provide funding for more assistance for those living with SCD. 
  • Dismantle institutional racism with a focus on SCD and an emphasis on monitoring and changing institutional practices that may be affected by racism. 
  • Address interpersonal racism with patients and colleagues, including “speaking explicitly about race within and across medical teams, with a focus on experiences of patients with SCD.”

While these above recommendations focus on “reduc[ing] the impact of racism on people with Sickle Cell Disease,” the overall outcome could have a wider reach. 

As therapies like the one announced by the FDA this fall become available, whether they actually help the patients who most need them will depend on the healthcare system’s willingness and ability to address these deep-seated structural issues. 

If enough medical institutions and practitioners speak up against the racialized and disparate healthcare system in the United States, then Black Americans could begin to get help where help is needed—sickle cell disease and beyond.