Different Disparities Displayed in Sickle Cell Care
More Programs Featuring Maya Bloomberg
In this program:
Some sickle cell disease patients have experienced distinct disparities in their care. Dr. Marwan Shaikh, hematology nurse practitioner Maya Bloomberg, and Carla Lewis discuss disparities that patients have experienced, biases that exist, and how sickle cell patients and advocates can continue to help in reducing care disparities.
Transcript
Interviewer:
So then I do want to talk about another obstacle to care, which could be different types of disparities. And, Maya, I was wondering if you could share what some of those disparities are.
Maya Bloomberg, APRN:
There’s, I mean, I think we can all agree that there's no greater health and racial disparity in medicine than what we see in sickle cell. I don't think people realize a huge psychological burden that is carried with sickle cell. So most of our warriors avoid the hospital at all costs. By the time they're going to the hospital, it's because they've exhausted all of their measures. And the majority of people...they get to the hospital, and then they have to prove to doubting providers that they're actually in pain. And then we have research that shows for sickle cell patients, they have longer ER wait times, they have longer time to receive the first dose of medication and a longer or usually reduced or SAH compared to Caucasians for trans...different types of injuries when we were compared. So there's data that confirms there is a racial disparity in the fact that it does predominantly affect people of color, makes you question, Is there a racial component towards it? So I think it's obvious that there are disparities. I mean, there was an article that came out in Europe, I think it was called “No One's Listening” about a sickle cell patient who had passed away, because the nurses didn't listen, and they didn't give them oxygen. So there was this whole article that published how sickle cell patients, there are disparities in the type of care that they're getting and the lack of good quality care.
But the thing is, it wasn't a surprise, we all know this is happening. It's good that they're publishing articles on this, so we're kind of having those uncomfortable conversations and screaming out the obvious that similar patients and warriors have experienced themselves. But we need to do more, and I think the first step is it's just to continue to bring awareness and just talking about other complications. You can have the sickle cell, and it really just takes one crisis to be the end all of sickle cell. That I think if patients and providers, providers really understood what sickle cell entailed and the psychological burden that it entails and really self-reflected, because we all have some implicit bias, I think I am one of the biggest sickle cell advocates. And, I mean, Harvard has this implicit bias test where at the end of the day, when I did the test, I showed that I had a slight preference for American European faces, and I'm thinking, “Wow, this is crazy.” So once I saw that, and I think I'm a very equal provider, I have to be very conscious when I'm caring for my patients, because this test showed that even then I think I’m the most huge ally and advocate for my sickle cell patients.
There are still some underlying implicit bias, and the only way that you can overcome them is to first acknowledge them. So I think providers really need to do some self-reflection and see how am I caring for my patients and really have those uncomfortable conversations. And that's the first step to really bring that change and kind of bridge this disparity, because I mean, you're a wonderful person, and that so many amazing warriors in my patients are just the best patients ever, that it's so frustrating and really disheartening when you see them getting mistreated and not believed, especially when it's a patient who's hospitalized once every two years, and then they are getting judged. So we definitely need to do better.
Dr. Marwan Shaikh:
And I'm hopeful that things will improve over time, we talk about how doing the people who are training medical students, fellows and they're being more engaged on the floor, and I think just the fact that we've been able to see drugs in the last three years, and now we wind up in like, “Okay, we really need to start talking about this again.” And so I think that kind of discussion is going to open the discussion or further and for training and for having people who are more comfortable dealing with patients with sickle cell disease. And ultimately we have to realize we're all human, we're all in this together, just like we're all in this together with COVID. And so every patient, like we talked about your son that has dreams and aspirations, and we have to learn to start recognizing that these people, that things are not going according to plan for them, their life is completely different. And now with treating therapy, hopefully things will be able to become normal.
Carla Lewis:
A little bit and that definitely awareness has a broad sickle cell very far from the time in for when my son was born in 2000. So we were...nowhere near where we are now. And I can say that even with communication with the doctors, even speaking more, and I mean the presentations that I can actually go to in a meeting and learn so much from physicians and healthcare providers on a whole is phenomenal. And I think the more conversations that we basically have about sickle cell, bringing sickle cell stories to life. Even our providers being able to share experiences and the progress of their patients with these new medications and also progress of their patients, just to see them go off to college or see they're now living with the living with a family, their own family life, those are the stories that we need to continue to share in the community, how our community have progressed. But it's also to have those uncomfortable conversations, definitely bring awareness to the biases that exist, and I think that a lot of physicians continue to share their experiences and just like Maya, Dr. Maya just finished sharing the testing what she discovered on there. But particularly her heart is so compassionate and always been so compassionate about sickle cell and her patients she served, that would give our patients hope and build more trust in the community, even with physicians, to see our fellow healthcare providers advocate.
This Hub [Diverse Health Hub] is also a definite resource that is great, because we're having this important conversation now, and we're bringing more awareness. One of the things I also say, our community is a big community, but we have to understand those that may not even have a relative with sickle cell, they may pop the question, “What is sickle cell?” So even having this important conversation of explaining what sickle cell is and bringing more awareness, and even I say show and speak up, talk with our community leaders, our legislators, and letting them understand the complications and what's going on with the sickle cell, because we understand. We do need more treatment, we do need access, more access to funding or to see a progressive health insurance that will cover more things that is required, especially an MRI, simple MRI or MRA. I know my son was denied a particular testing when he needed...he actually needed MRI and MRA. When he had an abnormal trans doppler, and I’m saying this is a child with sickle who potentially could have a stroke. How do we not…how do you...definitely say that this child cannot have further testing on something that important. So let in on a legislation, what are the barriers that the patients actually face? We know we're getting more new treatment, can they have access to these treatments? We know those that have more complications may not qualify for a trial.
So how can we definitely have the conversations with doctors that maybe this other treatment is helping that patient, maybe this treatment can help you and let them understand it, should be aware of treatments, upcoming treatments that are coming in the pipeline, because this one may not work for them. But the next work probably will, or the next one, that problem that exists will actually be help...I cannot imagine what our two years will look like, because I've seen what 20 years look like almost 20 years to look like, even for my son, and I saw the progression from a very sick child to a child that it's living well with sickle cell. So now I could also say that I have had those conversations with my child about treatments, about gene therapy, about bone marrow transplants. We did go through Be The Match as a potential match for him, and I can share that his brother, his younger brother is a match for him, so now he can get to consider another option. So we definitely do have more conversations and share resources and definitely talk, show up, speak up and continue those conversations to bring awareness.
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