The opioid crisis, along with the stigma of suspected drug use, and racial bias all contribute to make treatment access more difficult for people with sickle cell disease (SCD).
That was the take-home message of the 2021 Annual Sickle Cell Symposium Matters of Black Health: Perception vs Reality of Living with Sickle Cell Disease, an initiative sponsored by the University of Arkansas for Medical Sciences (UAMS) Adult Sickle Cell Clinical Program, which included an online audience of 30 participants.
The symposium opened with a short video in which people with SCD described the attitudes of physicians and nurses who often impede access to treatment to alleviate pain caused by the disease.
“When they don’t believe me, I assume they think I am drug-seeking and only want the medications. Actually, I hate taking pain medications and only go to the hospital when I absolutely need them,” Kennede, a young woman with SCD, said in a university press release.
“People like us who have had sickle cell their entire lives may not express pain the same way as someone else,” Kennede added. “We might not cry or crawl on the floor or anything; our pain tolerance is very high, so you can’t see we’re in pain sometimes. That’s the case with me.”
SCD comprises a group of inherited conditions affecting red blood cells, which carry oxygen from the lungs to tissues throughout the body. Mutations in the HBB gene, which provides instructions for making the hemoglobin oxygen-carrying protein, causes it to stick together, distorting red blood cells’ shape.
Abnormal blood cells eventually get stuck inside small blood vessels, obstructing blood flow and causing pain crises in the arms, legs, joints, back, or chest. These pain crises can occur suddenly, be mild or severe, and last anywhere from a few hours to a few days, or longer.
SCD is more common among people of African, Caribbean, Middle Eastern, Eastern Mediterranean, and Asian descent. According to Sarah Council, PhD, symposium presenter, and research writer for the UAMS Division of Hematology and Oncology, “The burden of illness becomes greater than it should be,” when considering the bias and stigma that are associated with it.
“In a study of 77 sickle cell patients, they found significant associations between the measure of stigma and their depressive symptoms,” Council said. “Patients reported greater stigma and higher scores on a depression scale. It’s a self-feeding mechanism of stigma and racial discrimination.”
During a pain crisis, people with the condition often seek immediate treatment for pain relief in hospital emergency departments, where they are seen by physicians who have little experience treating SCD.
Often, physicians are skeptical of pain complaints and suspect SCD patients are merely seeking drugs. Hesitancy in prescribing pain medications, brought on partly by the national opioid crisis and related deaths, adds to the burden.
“When you think about the overlay of race onto the families of my patients with sickle cell disease, it’s very real and affects them financially. It affects their jobs and all aspects of their lives, and then we have a life-threatening disease that worsens as they age,” said Suzanne Saccente, MD, another presenter at the symposium.
“Now, we’ve overlaid the opioid crisis on top of that in the last five to 10 years. It’s made their ability to receive care that much harder,” Saccente, who is also a pediatric hematologist and medical director of the Sickle Cell Program and Apheresis Program at Arkansas Children’s Hospital, added.
In an effort to counteract this tendency, Saccente has been trying to reach medical students early in their education to teach them about SCD before they treat these patients. She also pointed out the bias extends into research funding.
For example, SCD affects far more patients compared to cystic fibrosis (CF), a chronic lung disease that mainly affects Caucasian people. However, CF research receives seven to 11 times more funding than that for SCD.
Collin Montgomery, coordinator of the UAMS Adult Sickle Cell Disease Clinical Program, explained that because SCD is inherited, many symptoms begin in childhood. As adults, patients have gained experience managing their condition and often know the most effective ways of treating a pain crisis.
At times, patients will ask for a specific medication and suggest a dosage, which can be interpreted as a drug-seeking behavior by physicians with little experience treating the disease.
“A patient being able to request a specific medicine at a certain dose should be something we expect as health care providers. I don’t want to reinvent the wheel,” said Montgomery. “Plans should be individualized to each patient’s needs. There isn’t a one size fits all treatment with sickle cell patients.”
“To counter bias, there has to be more education pushed down from the top,” she added. “Unfortunately, a lot of people are unaware of their bias. In taking care of sickle cell patients, I say, ‘Know your bias and know how to manage it.’ We’re human, and all have potential for bias. We have a team approach that provides some checks and balances.”
According to Montgomery, educating patients and helping them communicate their needs to physicians and nurses more effectively also is a key step to facilitate treatment access.
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