Does Sickle Cell Disease Expose Racism in American Healthcare?

Does Sickle Cell Disease Expose Racism in American Healthcare?

Does Sickle Cell Disease Expose Racism in American Healthcare?

Unlike other diseases, the mortality rate from sickle cell disease is on the rise. When you consider that the majority of these patients are African-American, perhaps we shouldn’t be surprised.

   

Does Sickle Cell Disease Expose Racism in American Healthcare?

image by: Kagenmi

Many people deny that the effects of 200 years of slavery and another 100 years of Jim Crow continue to plague today’s African-Americans. Many people live in denial of the reams of experiential and empirical evidence documenting the continuing racial inequity in today’s United States.

But there’s no denying the fact that, in a country where progress is being made in the treatment of almost every major illness, over the last 25 years the mortality rate for people stricken with sickle cell disease has actually increased. And considering that between 60 to 80 percent of those stricken with the disease are of African descent, that undeniable statistic may be no coincidence.

“Given the prevalence of sickle cell disease among black Americans, vexing questions of race and stigma have shadowed the history of its medical treatment,” writes Princeton’s Keith Wailoo in March 2017 volume of the New England Journal of Medicine. “[… A] primary challenge for many patients with sickle cell disease remains a social one: being seen and treated as individuals who deserve relief, and being supported rather than stigmatized in a highly charged atmosphere.”

Wailoo doesn’t conclude that racism is to blame for the stagnation in sickle-cell patient outcomes—he draws no conclusion of any sort—but he understands that it is impossible to have a reasonable discussion of sickle-cell disease treatment without considering racism. America’s history—the medical community inclusive—is simply too shot-through with racism. It was the U.S. Public Health Service, after all, that conducted the Tuskegee Study of Untreated Syphilis in the Negro Male, a 40-year research program in which hundreds of infected African-American men were falsely told they were being treated so that White researchers could closely monitor the progress of the disease.

The effect of racism on the treatment of sickle cell disease was obvious enough that in 1972 President Richard Nixon—not exactly a champion of civil rights—owned up to it before signing the Sickle Cell Anemia Control Act. “It is a sad and shameful fact that the causes of this disease have been largely neglected throughout our history,” he said. “We cannot rewrite this record of neglect, but we can reverse it.”

And as Jenny Gold writes in a recent profile for the nonprofit Kaiser Health News, “For a while, funding did increase, newborn screening took hold and by the 1990s, life expectancy had doubled, with patients living into their 40s. But over time, funding waned, clinics closed and life expectancy started dropping again.”

Although the U.S. has a history of providing African-Americans with inferior medical care does not prove such discrimination continues today, there is some reason or set of reasons why patient outcomes for one of the only diseases affecting mostly African-Americans are worsening while the trend is the opposite for most every other disease (such as cystic fibrosis, a disease affecting mostly Caucasians that receives more than seven times the amount of funding per patient, even though sickle cell disease is a common genetic disorder in the United States).

One possible reason is not so much overt racism as the social inequity that is a byproduct of America’s racist past and present. That is a possibility posited a decade ago by a team of Johns Hopkins researchers puzzling over these worsening patient outcomes. Noting that the mortality rate of sickle-cell patients increased by approximately 1 percent during each of the 26 years they studied (1979–2005), they opined that the trend “may reflect a lack of access to high-quality care for adults with SCD.”

Gold profile of the problem suggests that it’s all that and more. The report points to a 2013 study finding that sickle-cell patients seeking treatment in emergency rooms experience a 25 percent longer wait time than patients in general, noting that “this difference was explained by the African-American race of the SCD patients.” To keep sickle-cell patients out of the ER, the disease requires comprehensive care—something too many patients simply are not getting. "One of the national crises in health care is the care for adult sickle cell,” says Dr. Elliott Vichinsky, founder of the sickle cell center at UCSF Benioff Children's Hospital Oakland. “This group of people can live much longer with the management we have, and they're dying because we don't have access to care."

No matter how you slice it, no matter what the reasons, it seems beyond dispute that in general African-Americans receive lesser healthcare than White Americans. “There's no question in my mind that class and color are major factors in impairing their survival. Without question,” says Vichinsky. And as Wailoo put it, sickle cell disease in America provides “a microcosm of how issues of race, ethnicity and identity come into conflict with issues of health care.”


About the Author:

Except for a four-month sojourn in Comoros (a small island nation near the northwest of Madagascar), Greggory Moore has lived his entire life in Southern California. Currently he resides in Long Beach, CA, where he engages in a variety of activities, including playing in the band MOVE, performing as a member of RIOTstage, and, of course, writing.

His work has appeared in the Los Angeles Times, OC Weekly, Daily Kos, the Long Beach Post, Random Lengths News, The District Weekly, GreaterLongBeach.com, and a variety of academic and literary journals. HIs first novel, The Use of Regret, was published in 2011, and he is currently at work on his follow-up. For more information: greggorymoore.com

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Last Updated : Tuesday, September 6, 2022