Sickle Cell Disease Care Barriers and Building Solutions
In this program:
What are sickle cell disease care barriers? What can we do to educate as well as bring awareness to current and future hematologists? Sickle cell advocates John Masembe and Jemela Williams share their perspectives.
Transcript
Interviewer:
What are some of the barriers in the treatment of sickle cell disease, and what can we do to educate as well as bring awareness to current and future hematologists?
John Masembe:
This is a heavy question. I think some of the things that do come to mind is education around two things, race and culture sensitivity. Especially the Black patient experience, to me, that's really, really important. When you have sickle cell disease, you're going to have pain crises and that forces you to go to emergency room or maybe talk to your doctor when you experience pain because that's what they teach you. However, not everybody in the emergency room or not everyone at the hospital is really going to understand who you are and how you interact or what your pain tolerance is compared to other people. So one of the hardest things as a barrier is culture sensitivity, for me, that's one thing. When a Black patient is experiencing pain, they give you...if you go to the hospital, you have what they call the pain scale, the little smiley thing, it goes from 1 to 10. When you have sickle cell disease, my pain tolerance for 10 is not going to reflect...or maybe an eight is not going to reflect the same pain tolerance for someone without sickle cell. But then on top of that too we all experience pain differently, but if you're a Black patient, you are less likely to be believed that your pain scale is high as opposed to a white patient.
So there's a lot of...one time, I had a doctor tell me, he was like, "Oh, I feel every time you feel you need a break, you have to come to the hospital." That was when I was...I think at the time I was about 17. What 17-year-old likes to choose to go to the hospital, because they want a vacation or because they want to get out. That really hurt me, to this day, I still can't believe that was the interaction that I had. So it was really hard. So it's you are faced with a double burden of, first of all, I have to prove to you that I'm in pain. And then second of all, when I get upset, now I'm an angry Black man who [chuckle] You know what I mean?
Interviewer:
Yes.
John Masembe:
You have to be...so there's a lot of like when a Black patient talks about, expresses how they feel, that can be interpreted as non-compliant, but that's not what we want. So education about race and culture interaction and how patients deal with pain, that's really important. And then on top of that too, working, having doctors engage with their patients outside of the hospital rooms. I think that would be really, really helpful.
Interviewer:
Yes.
John Masembe:
What we do here in Seattle every Wednesday or every two weeks, every other Wednesday, we sit down with our doctors, the hematologists, they come and they...it could be on Zoom. We talk about some of the issues that patients are experiencing outside of the hospital. Like, "Hey, I'm stressed. This is going on in my life". "Hey, I'm stressed. This is what's happening". That takes away the pressure of being in the same hospital room and the environment plays a huge role, right?
Interviewer:
Yes.
John Masembe:
And then the other part too, doctors also, we also...we have a Sickle Cell Walk. So our doctors actually come and participate in the Sickle Cell Walk. We have one that's coming up this weekend in Seattle.
So our doctors take time out their schedule, they come, they walk with us. And that helps build that relationship with our doctors. And it also takes away the stigma with, where patients have negative experience with the doctors. But to kind of bring it home and answer your question, some of the barriers, culture sensitivity, culture awareness, patient-provider interactions in the emergency room. But I think what would really help is education, engaging with your providers outside of the hospitals. This is where I'm going to challenge the doctors to do, talk to your patients outside of the hospital and see what their life is like. And then maybe the very last thing I would talk about is families. Families do need, families also have to play their role to speak up.
Interviewer:
Yes.
John Masembe:
When you're experiencing a barrier or you're experiencing discomfort. Any sort of, I don't know, it could be a disparity. Talk to your doctors, be expressive and see what that would really, really help, because it helped me, and I believe it can help a lot of people too.
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