What Can Communities Do to Eliminate Disparities in Sickle Cell Disease?

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In this program:

Communities need to understand that sickle cell disease (SCD) is genetic; no person with SCD made a conscious choice to be born with it. Patients need support and understanding; they need to be treated with respect and dignity when seeking care. Disparities in SCD can be eliminated by increasing knowledge of the disease throughout the whole community, not just physicians and clinics, but lay people such as the school, financial, and disability systems. Communities need to understand the impact that SCD has on patient's life and work balance as to optimally interact with them and support their needs. Watch as Dr. Ify Osunkwo from Levine Cancer Institute explains.

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Question:
What can communities and patients collectively do to eliminate disparities around living with sickle cell disease?

Dr. Ify Isunkwo:
So, what can communities do to eliminate disparities? Take away the shame and stop the blame. Sickle cell disease is genetic. No person with the disease made the conscious choice to be born with that condition, that’s number one.

Number two, they don’t have any control of how the disease affects their body or how they may need pain medication and so we need to stop blaming them for having the manifestations of the disease that is really not their fault and instead of casting blame really try to support and understand and remove the mystery and the cloud that kind of shrouds them and puts them in the corner of undesirable people. They need to be treated with respect you know, and dignity when they seek care – and understanding. We need to increase knowledge of everybody, not just doctors and nurses in the emergency room, and in the hospital and in the clinics, but lay people, the school system, the financial system, the disability system.

Understand that the disease has profiled impact, not just pain, but also work-life balance, actually being able to work, being able to go to school, achieve your maximum educational attainment. So, this is what we need to kind of make sure that every boarding committee understands because it will kind of shape how we interact with these patients and how we provide them with the support that they need.

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