What Health Disparities Are Consistently Seen in Sickle Cell?
More Programs and Publications Featuring Dr. Seethal Jacob
In this program:
What do sickle cell patients experience in the way of health disparities? Watch as expert Dr. Seethal Jacob shares common health disparities and care disparities seen for sickle cell patients and changes that can improve their care and health outcomes.
Transcript
Interviewer:
Now, we know that there are many factors that can mentally impact, affect outcomes for families facing sickle cell trait or disease, and with sickle cell being the most common blood disorder in the world, what would you say are the notable health disparities consistently observed?
Dr. Seethal Jacob:
Absolutely, I think number one is lack of access to sickle cell experts. I think that's the biggest disparity that individuals with sickle cell disease experience. Not being able to have someone whose entire focus is on knowing and being the expert in sickle cell so that patients with sickle cell disease can receive that comprehensive subspecialty care. I think that leads to a lot of the disparities that we see, and obviously connected to that is that we don't have nearly enough sickle cell centers here in the U.S., but across the world, to be able to support patients with sickle cell disease in that way. I think the number two thing that I think about always is not just access to those experts, but then access to treatments and awareness of what treatments are available to patients with sickle cell disease, and those treatments don't only include actual medications, but also things like healthy living and nutrition, social work, and mental health support. Nurse educators that can help to teach patients and families about transition from pediatric to adult healthcare. Those are not things that we see commonly in the care of patients with sickle cell disease, the way that we see in other inherited chronic diseases like cystic fibrosis or hemophilia, for example.
And then the last thing I think it all goes...is all connected. I think it's related to awareness and education about sickle cell disease, not just within the medical community, but in the community at large, and I think that's reflected in many of the things we hear our patients say about how they're treated when they go to the emergency room, how they're viewed when they're hospitalized in a pain crisis, how individuals at school or work may not believe that they have sickle cell disease because they can't see it on them. And those are the things that are a result of lack of education or miseducation about sickle disease in our communities.
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