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Racism in Sickle Cell: Why Black Lives in the Healthcare System Are Forgotten

Home / Blog / Racism in Sickle Cell: Why Black Lives in the Healthcare System Are Forgotten

This month’s blog post is written in honor of Marqus Valentine, Co-Founder of Sick Cells, and it is with a heavy heart that we share the news of his passing. Marqus was a truly passionate and dedicated advocate for the sickle cell community who fought tirelessly to raise awareness of the realities of living with SCD. Though we are heartbroken by the loss of our fiercest warrior, we are dedicated to continue working with you all to fight medical injustice and improve the lives of those affected by SCD for generations to come.

On May 25, the horrific death of George Floyd sparked global unrest over racial injustice and police brutality. The cries of George were heard around the world and awakened a new dawning of critically examining all of the ways in which system racism continues to plague our country. In the world of sickle cell disease, it’s at the intersection of racism and the healthcare system that we find Black lives are discounted, uncared for and ultimately forgotten. People with sickle cell cruelly understand that systemic racism infiltrates all aspects of their daily lives, and goes well beyond interactions with police officers.

“Those who want to keep the structure of police departments will react to beatings and killings by saying there are just one or two bad apples in the bunch,” said Nancy Rene, a sickle cell disease (SCD) advocate. “When we [those impacted by SCD] encounter a bad sickle cell doctor, people may say the same thing. ‘It’s not the health system, just a doctor who is stressed or exhausted.’ This is supposed to redirect us from institutional racism that’s occurring.”

Sickle cell disease is the largest rare disease in the United States, discovered over 115 years ago, and the most common genetic blood disorder in the world. Sickle cell disease also disproportionately impacts Black people.

Sadly, research shows that prejudice and stigma associated with the disease are shortening the lives of those with SCD, faster than the disease itself, and sickle cell is a horrific condition.

As Nancy reflects on her experiences with the healthcare system to advocate for her grandson, she said, “we often ask questions like:”

  • Was the doctor well-trained in SCD? Or did their medical school think that a disease that affects mostly Black people wasn’t worth studying?

  • Did people who witness their behavior report it? Or did they close their eyes and turn their backs?

While academic research has proven there are disparities in healthcare for Black individuals and, specifically, those living with sickle cell, we have heard firsthand from the SCD community what a disparity looks and feels like in practice. Over the last several years, we’ve collected more than 200 stories of those in the SCD community and we’ve recognized an alarmingly sad, yet obvious pattern.

Maybe it’s Dennis, who told us that some Black sickle cell patients are suspicious of clinical trials because of what happened in Tuskegee in 1932. Or, it’s Tashena, who told us she doesn’t like being admitted to the hospital because she’s judged by the nurses who don’t believe her pain is real because she doesn’t “look sick.” Nesha told us, “we’ve got to fight with them [medical staff] and basically prove that we’re in pain in order to get what they know we need.” Danielle said she doesn’t think influential state officials care to know about sickle cell.

These are merely four anecdotes from the hundreds of stories we’ve collected since 2016. While SCD impacts individuals differently, the stories of mistrust between patients and providers, negligent doctors, slow emergency departments, and lack of knowledgeable health professionals are nearly all the same. These stories echo the results of countless research studies demonstrating how false notions and hidden biases of clinical providers fuel inadequate treatment of pain for Black communities.

“We’re often left wondering if the complaints we put in about the same bad doctors are addressed or covered up by their institutions,” said Nancy. “Are there laws that limit the amount of damage that can be assessed in negligent treatment? We know the answers to these questions don’t serve us.”

A System That Can’t Be Fixed

A doctor quoted in a 2019 New York Times article described sickle cell patients as having “subtle or overt brain damage” to defend why two of the most recent FDA-approved treatments shouldn’t be considered for everyone. The community, shocked that this would be published in a publication like NYT, responded with letters to the editor expressing disagreement. Some letters highlighted that a common stigma of SCD patients is that they are uneducated and cannot make decisions about their own health. Others wrote that not one SCD advocate was interviewed for the article, before these accusations were made. The article was never updated.

“Whether it’s a subtle comment from a medical professional or not being prioritized in emergency rooms when your bones feel like they’re crushing because it doesn’t ‘look like your in pain,’ our community is no stranger to discrimination,” said Marqus Valentine, co-founder of Sick Cells.

“I’ve had sickle cell for more than three decades, and I still fear getting a nurse who doesn’t understand my illness and accuses me of being a drug seeker.”

Racism is a powerful force that plagues our nation. Sickle cell advocates learn how to weave through it, and despite the odds, many survive in the very environments that often neglect them. The systemic racism that plagues our nation affects every inch of our beings. Our health should not be a victim of racism — whether it’s intentional or not.

In this time of great reflection and global awareness about how racism lurks in every corner of our country, it is also a time to reflect on how racism impacts all systems, including healthcare. To these ends, we still hear the powerful words of Martin Luther King Jr., “of all forms of discrimination and inequalities, injustice in health is the most shocking and inhumane.” In 2020, we continue to face such injustices and inequalities in healthcare.

We’re calling on healthcare professionals to stand alongside us to denounce racism. Providers need to address their own implicit biases, listen to the patients, take pain crises seriously, hold colleagues and employers accountable, fight for access to new therapies, demand better SCD education for clinical communities, and center and amplify the voices of people of with SCD – not their own, and not just for a day, a week, or a hashtag.  These are the voices that will create change.

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