Health Care Disparities with Sickle Cell Disease

Reducing Health Care Disparities in Sickle Cell Disease: A Review

Lee, L., Smith-Whitley, K., Banks, S., & Puckrein, G. (2019). Reducing Health Care Disparities in Sickle Cell Disease: A Review. Public health reports (Washington, D.C. : 1974), 134(6), 599–607. https://doi.org/10.1177/0033354919881438

The authors are all from various backgrounds and institutions. They are as follows:

LaTasha Lee, PhD, MPH Department of Clinical Research & Leadership, School of Medicine and Health Sciences, George Washington University, Washington, DC, USA.

Kim Smith-Whitley, MD. Comprehensive Sickle Cell Center, Children’s Hospital of Philadelphia, Philadelphia, PA, USA, and Perlman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA

Sonja Banks, MPA, MBA. Sickle Cell Disease Association of America, Baltimore, MD, USA

Gary Puckrein, PhD. National Minority Quality Forum, Washington, DC, USA

Background

• This disease is caused by a misshaping of red blood cells.

• Sickle cell disease (SCD) affects about 100,000 people in the United States

• it is important to treat properly because this condition often comes with kidney disease, stroke, and liver and lung complications.

• On average, a person with SCD has a shortened life span by about 30 years.

SCD is an orphan disease, meaning it affects less than 200,000 at any given time. It does not receive appropriate funding for research or medication because it has not gained a lot of public attention, partially due to the fact that it affects primarily minorities. This seems to be the source of most disparities associated with sickle cell disease.

Most people living with it have public insurance and have limited access to speciality care. SCD treatments are usually expensive and this can be hard for someone with limited resources to live with. \

Another disparity is the life span difference between a person with SCD and a person without it. The median age death for people with SCD is 45, which is 25-30 years below average. Survival rates have been improving or children, however, mortality rates for people aged 20-24 have been increasing.

This is because preventive care for patients with SCD is lower than with other diseases.

IN 2014, 250000 ER visits and 90000 hospitalizations were from SCD because of a lack of primary care doctors who specialize in this area.

The healthcare price is also out of the question for people living with limited resources. Annual costs were anywhere from $35,000-$112000. Costs for people with hemophilia or cystic fibrosis stayed under 17,000 across the board.

Overall, the problem is that minorities, specifically African Americans, are struggling with sickle cell disease more than necessary. This is due to the fact that most people with this disease do not have access to proper, affordable, and effective treatment. Diseases like cystic fibrosis, which effects less than half the number of people that SCD does, receives over twice the funding and research attention.

In order to resolve this issue, a national surveillance system, enhanced models of access to care, and having more trained providers would be beneficial.

• National surveillance systems can help determine where to place resources and help bridge gaps in research.

• have coordinated care for SCD patients would decrease the high number of ER visits and hospitalizations. Healthcare needs to understand the importance of personalized healthcare for this disease. There are 130 centers for 20,000people living with hemophilia, but there are 40 centers for 100,000 people living with sickle cell disease. this must change.

• Programs that equip doctors with expertise on complex disorders like SCD can help expand the amount of care available, and decreasing the negative effects of sickle cell.

One major question to be asked is: Is there a way to find a cure for this disease, or only increase quality of life for SCD patients through better treatment?