Potential Opportunities for Improving Sickle Cell Care

Staying healthy with sickle cell disease (SCD) starts with early diagnosis. Treatment is available, but it can be hard to get all the care you need. The treatments have improved outcomes for many people living with SCD, but there are still unmet needs. Doctors and researchers are looking at these needs to improve care for people with SCD.¹

Current unmet needs

Needs for SCD care that have not been met include:¹

• Lack of long-term monitoring
• Lack of population study data
• Differences in care quality and access among minority groups
• Research funding challenges

Trying to meet these unmet needs can help improve sickle cell care for Americans. Researchers have a few ideas for how to do this.¹

Option 1: Establish a national registry

A disease registry or database can help researchers learn more about the natural history of a disease. A registry can help find new treatments and show which treatments are working and which are not. Other benefits of a registry include:¹

• Look for and find trends in how often SCD is happening and how many people have it
• Increase awareness and understanding of the disease
• Encourage more people to get tested and treated

Option 2: Find and address disparities

Disparity is a term used to describe when different groups of people experience different healthcare quality. This difference in quality can result from a variety of factors, including:²

• Access to care
• Insurance status
• Cultural beliefs and practices
• The ability to read and understand health information (health literacy)
• Social and economic status

Disparities in healthcare can lead to worse health outcomes for minority groups. These groups may not have access to the best possible treatments. Or they may get treatments that are not as effective. This can lead to increased rates of death and illness for minority groups.²

Data collection, clinical trials, and research are expensive. In the United States, most people with SCD are Black or Hispanic with African ancestry. Systemic racism has caused these groups to have less access to healthcare than the white majority.^1,3

Sickle cell care is also affected by unequal treatment of minority groups. Treating SCD does not make healthcare companies as much money as treating conditions that affect white people. So there is less research funding and not enough specialists.³

For example, there are only 49 adult sickle cell centers in the United States. However, there are more than 100 centers for hemophilia and cystic fibrosis (CF). These diseases affect about the same number of people as SCD. But hemophilia and CF affect more white people than Black people.³

Because of this, many Black Americans are treated for SCD by their primary care doctor. Without special care, health outcomes are worse among this population.³

Addressing disparities

There are many ways to try to make SCD outcomes more equal. Improving access to healthcare is one way. This can be done by:^1,3

• Increasing insurance coverage
• Providing help with transportation
• Increasing the number of doctors who are SCD experts

Also, public education can help to raise awareness of SCD and its symptoms. Understanding can lead to earlier diagnosis and treatment.¹

Option 3: Invest in research and SCD centers

Making sure people with SCD can get regular and expert care at an SCD center is a smart financial strategy. People who do not have complete, regular care often spend more time in the hospital. This costs more money overall.^1,3

It is easier to control costs if everyone receives the same high-quality care. This is especially important for at-risk groups. To create this equity in care, lawmakers will need to prioritize funding for SCD centers.^1,3

While treatment is available for SCD, there are several ways SCD care can be improved. To find clinical studies in your area, visit clinicaltrials.gov. Talk to your doctor about ways you can support research and investing for SCD.^1,3