Although there are persistent stereotypes that label it as such, sickle cell disease (a red blood cell disorder) is actually not a condition that only affects black people. While it is commonly found among people of African descent in the U.S., it is also found in Hispanics, Southern Europeans, people from the Middle East and India. There are, however, glaring disparities in how sickle cell patients are treated in the U.S. healthcare system—mainly due to the fact that the majority of sickle cell patients in the U.S. are black. In a country where racism and white supremacy are embedded into every structure, it is unsurprising that black sickle cell patients find it hard to get comprehensive and quality treatment. And, as a recent article by STAT shows, this is made even more complicated by the ongoing opioid epidemic.
The U.S. health care system is killing adults with sickle cell disease. Racism is a factor — most of the 100,000 U.S. patients with the genetic disorder are African-American — and so is inadequate training of doctors and nurses. And the care is getting worse, sickle cell patients and their doctors said, because the opioid addiction crisis has made ER doctors extremely reluctant to prescribe pain pills. [...]
In hospitals, sickle cell patients are typically treated by generalists who know little about the disease and patients’ desperate need for pain relief. At one hospital, researchers found that sickle cell patients waited 60 percent longer to get pain medication than other patients who reported less severe pain and were triaged into a less serious category.
STAT-conducted interviews with 12 sickle cell patients in order to understand their experiences when seeking medical care. Many reported that they are often treated by doctors who know very little about the disease and the need for pain management among patients. They also shared that it is common knowledge among sickle cell patients that if you go to the emergency room for treatment, you may not leave alive. Failure to provide accurate treatment is a cause of early death among patients and speaks to the need for improved education and training for doctors and medical professionals.
But an immediate cause of early death is a catastrophic failure to give sickle cell patients competent care. The mortality rate for adults with the disease cell has risen 1 percent every year since 1979, the hematology society reported in 2016. Half of adult sickle cell patients are dead by their early 40s. (Children fare better.) ...
Only 20 percent of family physicians say they feel comfortable treating sickle cell disease, a 2015 survey of more than 3,000 such physicians found, leaving many patients without routine, preventive care. They are therefore more likely to seek care in ERs during an acute sickle cell episode, called a vaso-occlusive crisis, in which an inadequate blood supply triggers excruciating pain and damages vital organs.
One of the most significant findings from these interviews is how sickle cell patients are often assumed to be drug addicts when seeking treatment for pain in the ER. Though statistics suggest that blacks may be less likely to be addicted to opioids (or at the very least, are no more likely to be addicted than their white counterparts), sickle cell patients are highly scrutinized and often denied pain medication due to racial bias. This finding is also consistent with studies that have demonstrated that black patients overall receive less pain management than whites, because of beliefs that they feel less pain or have “thicker skin” than whites do.
“If you are African-American and are in the ED for pain, you are almost automatically tagged as drug seeking,” [Dr. Keith Quirolo, former pediatric hematologist said]. In one study, 63 percent of nurses surveyed said many patients with sickle cell are addicted to opioids. In fact, their rates of addiction are no higher than the general population’s, said Dr. Alexis Thompson, president of the hematology society. They may even be lower: Although blacks make up 13 percent of Americans, they accounted for only 8 percent of opioid overdose deaths in 2015, the most recent year studied.
Knowing the attitudes they’ll encounter, patients therefore prepare for the ER as for a job interview. “I always dress professionally,” said Wanda Williams, 67, a retired school administrator in the Bay Area: nice shoes, “interesting earrings,” every hair in place, and Vogue-worthy makeup. “It’s crazy that you, as an African-American, have to do this so you aren’t treated like a drug addict.”
It is an unfortunate reality that race and racism play a role in every aspect of American life. For black sickle cell patients, they cannot escape this fact—and it is misunderstanding, miseducation and bias that often prevents them from receiving the treatment they need to have healthy, pain-free lives. Until we address the inadequate training of doctors and nurses and the racial bias that surrounds this disease and those who have it, it will be impossible to lower the mortality rate among patients. As emergency nurse Paula Tanabe from Duke University said, “I just think you can figure out a way to take care of sickle cell patients who come to the emergency department, once you get past the attitude of ‘they’re black and they’re addicts.’”