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This week's blog was written by our Director of Volunteering Coordination, Alan Chen.
Sickle Cell Disease (SCA/SCD) is a chronic genetic disease affecting around 100,000 Americans. A bit of biological background about the disease: essentially, there is a mutation in a hemoglobin gene causing a defective ability to carry oxygen throughout the body. Those with SCD have a sickle-shaped red-blood cell comprising a portion of their red-blood cells. This leads to more complications than just low-blood-oxygen-saturation however. Those with SCD are high risk for stroke, anemia, infections, and high periods of pain. Many patients are never able to live a full healthy lifestyle, but relegated to a reduced lifestyle.
I encourage you to consider how having Sickle Cell disease may affect your lifestyle. To have constant interruptions in your life, the continuous chance of needing to seek medical attention, and the chronic pain is something that would quite simply be life changing. A patient described not having access to his pain-meds as a “11 on the pain scale, with his baseline pain after taking the medicine being a 5.” Chronic pain of this sort is almost unfathomable to us, and we should be doing all we can to understand and help the efforts of SCD relief.
Unfortunately, Sickle Cell Disease is yet another condition that disproportionately affects Black and Hispanic Communities in the US and beyond. Disparities caused by SCD aren’t just propagated by the social determinants of health, but also genetic factors. The deficient hemoglobin gene is found in primarily Black communities across the US. It is estimated around 1 in every 365 black births have SCD. Around 1 in every 16,300 Hispanic-Americans are born with Sickle Cell Disease. Moreover, nearly 1 in 13 Black or African-American babies is born with the sickle cell trait—an astounding figure of a high gene-frequency given the fairly low attention the mass public gives the condition.
I was inspired to learn more from Dr. Morey Blinder of Washington University School of Medicine’s presentation on SCD. While I enjoyed the more medical side of the presentation, I gravitated most toward Dr. Blinder's explanation beyond this surface level of Sickle Cell Disease. He introduced me to a more comprehensive understanding of SCA patient's lifestyle changes due to the disease. I spent a great deal of time last evening considering how my life would be affected should I have Sickle Cell Disease. To have constant interruptions in my life, the continuous chance of needing to seek medical attention, and the chronic pain is something that would quite simply be life changing.
I found the unfortunate reality that SCA primarily affects those of central-African descent and those of black heritage in the US most disheartening. This fact also coincides with the reality that black communities are often low-income, and many still don't have ready access to healthcare. Furthermore, with the Affordable Care Act potentially on the chopping block in the future, there will be thousands of Americans with their livelihoods at stake. This fact also prompts me to wonder why the realities of Sickle Cell Disease aren't as well known to the mass public. This ignorance may relate to the lower-prioritization of marginalized communities in the US. Many diseases discovered as far back as SCA (discovered in 1910) have far more significant advances in treatment and patient outcomes that SCA. This means progress for this disease is likely hindered because conditions affecting black communities may not be as prioritized in medical
research. This institutionalized racism is challenging to counteract, unfortunately. Still, it does implicate that effective mass treatment for sickle cell disease would take more than just advances in research, but an overhaul of institutional medical priorities. Nonetheless, we can take steps today to raise awareness and educate ourselves more about the condition.
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