Importance of Diagnostic Equity for Sickle Cell Community
More Programs and Publications Featuring Maya Bloomberg, MSN, APRN
In this program:
What impact can diagnostic equity have on the sickle cell community? Hematology nurse practitioner Maya Bloomberg from Sylvester Comprehensive Cancer Center discusses diagnostic equity, the prevalence of sickle cell, and ways that diagnostic equity and health outcomes can be improved.
Transcript
Interviewer:
What is diagnostic equity, and why is it important in the sickle cell community?
Maya Bloomberg, MSN, APRN:
So diagnostic equity refers to ensuring that individuals from all backgrounds and communities have equal access to timely and accurate diagnosis, regardless of your race or ethnicity or socioeconomic status, or geographic location. Now in sickle cell disease, we have newborn screening, mandatory newborn screening, where every child born in the United States is going to be checked for 40+ different genetic disorders. Sickle cell is actually the most common inherited genetic disorder and the number one that's picked up from this newborn screening. And the reason we do this is we know that screening and early diagnosis always will allow for the best outcomes. So newborn screening specifically for sickle cell, it allows us to have early interventions such as starting penicillin prophylaxis or starting hydroxyurea (Hydrea) in our babies, which again, hydroxyurea is the only medication proven to prolong life and reduce mortality. Now, when we think about sickle cell, it really is a global crisis. In the United States, we have over 100,000 individuals living with it. But think about in Sub-Saharan Africa, there are over 5 million individuals with sickle cell disease, over a thousand babies being born. The prevalence is insane. And, unfortunately, the areas that are in most need are the ones who are lacking access to newborn screening and hydroxyurea and these life-saving treatments.
Bringing it back to the United States though in diagnostic equity, I think there is a deficiency and a room for improvement with regards to appropriate screening tests being performed. So again, screening tests are what's going to help us identify things early so we can intervene before it becomes a problem. So with sickle cell, knowing that it can cause head to toe complications because anywhere blood travels, sickle cell can affect, we want to check your eyes, we want to do different things to make sure that your organs and everything are healthy. But unless you're with a provider who knows what to actually check for, they might not necessarily be performed, because sickle cell is largely misunderstood and only thought to be a disorder of pain and anemia. So I think with better training among our providers, we will do that. But when it comes to diagnostic equity in sickle cell within the United States, I really think about these screening tests, which are going to help with early diagnosis, early intervention for the best health outcomes.
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