There are 100,000 people affected by Sickle Cell Disease in the United States. One in every 365 African Americans and one in every 15,000 Latinx are born with the disease. Yet only a mere 20% of family physicians report feeling comfortable treating patients with Sickle Cell Anemia. With so many people suffering from such a horrible, debilitating condition, why aren’t physicians adequately trained to treat these patients competently? I would suggest that is because this disease almost solely affects people of color. In this new awakening of the African American plight, we must recognize the urgency of this matter. Utilizing the upcoming World Health Day, guided by its theme, Building A Fairer, Healthier World, to springboard into action changes to how Sickle Cell patients receive care.
To level set and ensure we are all working with the same understanding of SCD, I will share some facts. According to the National Heart, Lung, and Blood Institute, Sickle Cell disease is a group of inherited red blood cell disorders that affects hemoglobin, the protein that carries oxygen through the body.
The disease can cause substantial, long-term, and costly health problems, including infections, stroke, and kidney failure, many of which can reduce life expectancy. Having sickle cell disease also raises your risk for severe illness from COVID-19.
For many reasons, this disease and the people who live with it are cause for significant consideration.
The following are a few:
· Research funding and pharmaceutical investment are not comparable to less than equitable diseases.
· Access to Healthcare is limited in many areas of urban and rural neighborhoods.
· Higher morbidity and mortality rates.
· Inadequate Access to Specialized Care.
· Low Quality of Care.
· Barriers to getting necessary medications.
If everything and everyone were fair and healthy, life would be grand, but the reality is we are far from it. Additionally, we know it will be quite the task to close the enormous healthcare equity gaps; nevertheless, we must do it.
The concerns mentioned above are microcosms of systemic racism. Yes, even in Healthcare, SCD does not escape the biases that prevail in the rest of the world. Over the past 20 years, I have spoken with numerous families of children with SCD, and whether you ask 200 patients or two patients, the narrative does not change. A significant percentage report experiences of intimidation, condescending looks, and comments. Perhaps, the most repeated complaint is patients who feel as though they are not heard by their provider, especially in emergencies. I must admit that in my personal experience as a mother of an SCD patient, I have had to remind staff to please listen and hear what my son is saying.
· Lack of SCD knowledge on providers in ambulatory and emergency department (ED) settings leads to the stigmatization of SCD patients as drug-seeking and inappropriate and ineffective care.
· There is no sense of urgency leading to extremely long waits before receiving care in the ED.
· Disrespectful providers who did not consider the patient or family’s information leads to under medication or overmedication for pain.
What can we do?
We begin by acknowledging the genuine issues that exist. Our world has an excellent opportunity to create a new care path for black and brown people with Sickle Cell Disease. The Review: Reducing Health Care Disparities in Sickle Cell Disease states that cystic fibrosis affects fewer than half the number of persons (with SCD) but receives 3.5 times the National Institutes’ Health funding and 440 times the funding from national foundations. Allowances must be made equal across the board.
Additionally, education will be essential in this evolution: SCD patients, providers, healthcare staff, policymakers, researchers, and everyone else who influences SCD care delivery. We must work together. The effort will take agencies coming together to address housing, healthcare facility locations, and pharmacies, to name a few.
With fundamental, tangible changes, we could make this World Health Day the best day!