Sickle Cell Screening and Outcomes | Impact of Stigma and Discrimination
Hematology nurse practitioner Maya Bloomberg from Sylvester Comprehensive Cancer Center shares her knowledge about disparities in sickle cell screening and care and solutions toward equity.
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In this program:
How are sickle cell screening and outcomes impacted by societal attitudes, discrimination, and stigma? Hematology nurse practitioner Maya Bloomberg from Sylvester Comprehensive Cancer Center shares her knowledge about disparities in sickle cell screening and care and solutions toward equity.
Transcript
Deandre White:
So how do societal attitudes, discrimination, and stigma impact screening and outcomes in sickle cell patients?
Maya Bloomberg, MSN, APRN:
So sickle cell has largely been neglected for far too long. It receives significantly less funding, and we know that funding has a direct correlation with quality of life, treatment options, and ultimately better health outcomes. Sickle cell is also extremely misunderstood and stigmatized since we live in a discriminatory environment to chronic pain, which is then worsened in an already marginalized group of individuals. So this ultimately leads to patients having really just delaying seeking care to avoid the judgment and mistreatment. There's a study that shows around 67 percent of individuals will avoid seeking medical treatments, even though they know their crisis is very severe and should be treated just to avoid the judgment and mistreatment. .But, unfortunately, that can then lead to worse health outcomes because of the delays in treatment. And then unfortunately, sickle cell isn't the most popular diagnosis to treat, and there's a shortage of providers for that, which then impacts patients receiving that comprehensive sickle cell care and appropriate screening to help improve health outcomes as well.
Deandre White:
Yes, and to kind of add to what you're saying, when I did an internship in Tampa General, I was around a lot of sickle cell patients, and one of them that I particularly remember, he had been there three times that week. So that was his third crisis that week. So everyone there was very familiar with him. And I guess he kind of had a bad reputation at the hospital or in the emergency room, because I noticed that everyone would kind of just walk past his room. They'd look at him, and then they'd walk past the room. No one would come in and interact with him. It wasn't until later that I learned that all the nurses and the doctors thought of him as a drug chaser, basically, because he has this high pain tolerance, as any sickle cell patient would, and they just thought that he was there to get narcotics and to leave. But no, he needs long-term care. And he didn't have insurance, of course, so it's that entire story.
Maya Bloomberg, MSN, APRN:
I wish it was an isolated story. The stigmatization and drug seeking terminology, it's just so harmful. And the reality is, is when you look at opioids, the rate of addiction is extremely rare. Less than 10 percent of people actually develop substance use disorder when you're taking opioids. And, unfortunately, it feels like providers are almost trying to find and catch people who are misusing the treatments as opposed to just believing the patient and being more compassionate about this treatment. Because at the end of the day, the psychological burden that these groups of warriors have to deal with is arguably much worse than the physical pain. And I've never seen other people having to really just prove to doubting providers that their pain is valid and deserving of pain medication. And it just really highlights the racial and the stigmatization piece of it. And it's frustrating because there's plenty of literature and studies that confirm the negative attitudes towards sickle cell, that there's longer wait times in the emergency room, longer time to receive your first dose of medication. And oftentimes it's an inadequate dose all to begin with. So it's very disheartening that there's so much data that confirms that this is being done.
But we are slowly changing that. It's an uphill battle. But I would say in the last few years, we really are starting to change that narrative and really help humanize sickle cell and realize that these warriors have families. They don't want to be in the hospital. They have jobs and other things to do and really just bring more compassion to treating these individuals.
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