By Stacey Butterfield
Sickle cell disease is a nearly perfect breeding ground for health inequities, Maureen M. Okam Achebe, MD, MPH, told meeting attendees on Thursday afternoon.
"In the U.S., it affects mostly a minority race. And most times when patients are in contact with the health care system, they present with pain that needs opioids, and opioids are a problem in our country," said Dr. Okam Achebe, clinical director of the division of hematology at Brigham and Women’s Hospital and an associate professor at Harvard Medical School, both in Boston.
By the time an internal medicine physician meets patients with sickle cell disease, they've likely already encountered microaggressions, implicit bias, institutional racism, or macroaggressions in their health care encounters, she noted.
"They may be overt or not, they may be intentional or not, but these are what patients are facing almost every time they come in contact with someone in the U.S. health care system who doesn't know them," said Dr. Okam Achebe. "And this is all on a bedrock of structural racism."
To provide optimal care for a sickle cell crisis, it's useful to think about the background experience and knowledge that patients are likely bringing with them. "Patients are facing recurrent, excruciating pain episodes, and the awareness that this episode, which is excruciating, will not be the last," she said. "They also have the knowledge of their likely early mortality, which very often health care providers have made them more aware of."
Patients are also well aware that even with clinicians' best efforts and recent advances, the available treatments for sickle cell are imperfect.
The good news is that clinicians can take steps to lessen the burden. "There are things that each of us can do to address interpersonal racism, to dismantle institutional racism, depending on what your function is in your institution, and to reduce the impact of structural racism on our patients," said Dr. Okam Achebe, directing her audience to take advice from an article published in the New England Journal of Medicine in 2020.
Strategies to address interpersonal racism in health care include speaking explicitly about race and creating safe spaces for others to do so, partnering with patients to make use of their expertise, and practicing mindfulness and self-reflection about your care for patients with sickle cell disease, recognizing that everyone has biases.
On an institutional level, the article suggests creating formal reporting systems for racism like those for safety events and instituting protocols for pain management in sickle cell disease to speed care. To fight structural racism, clinicians can push for funding for comprehensive sickle cell disease centers and for more psychosocial support for patients with sickle cell.
Dr. Okam Achebe concluded her talk with a quote that she noted has unfortunately not lost any relevance since U.S. Secretary for Health and Human Services Kathleen Sebelius said it in 2011. “It’s time to refocus, reinforce, and repeat the message that health disparities exist and that health equity benefits everyone," she said. ■