Bringing whole-person care to sickle cell disease management

Call to action

We’re committed to active involvement with our care provider partners and going beyond the contract to create a real impact on the health of our communities. We are excited to share a new and improved way to care for people living with sickle cell disease (SCD). HealthKeepers, Inc. has created a comprehensive SCD care management program. The program partners with members and care providers to remove barriers to care, improve and facilitate treatment adherence, and increase the quality of life for people living with SCD. By focusing on the prevention of SCD complications and building strategies for effective pain management, we aim to reduce preventable emergency department (ED) use and hospital admissions. 

Our goal is to ensure that members with SCD receive comprehensive whole-person care that goes beyond treating disease symptoms. Through this program, we will provide disease education, medication adherence monitoring, care coordination, as well as connections to community resources that support social drivers of health and other critical services. By building trusting relationships between HealthKeepers, Inc., our members, care providers, and community resources, we assist our members in achieving the best quality of life possible.

To refer an Anthem HealthKeepers Plus member to the SCD Care Coordination program, call Provider Services at 800-901-0020.

Why this is important

SCD is a chronic condition and is the most common inherited red blood cell disorder in the United States affecting at least 100,000 Americans.¹ The Center for Disease Control and Prevention (CDC) reports that SCD affects one out of every 365 Black and African American births and one out of every 16,300 Hispanic and Latinx births.¹

Most care providers are familiar with the unpredictable symptoms and long-term morbidities that individuals affected by SCD experience, including pain and vaso-occlusive crises, depression, and fatigue. Repeated vaso-occlusion, infarction, and chronic hemolytic anemia lead to organ dysfunction. More than half of people living with SCD have some organ disease and at least 24% have damage affecting multiple organs². Vaso-occlusive events can have devastating consequences across all age groups. For example, it is estimated that 50% of people with SCD will experience cerebral vasculopathy by age 14, and 25% of adults with SCD will experience a stroke by age 45.²

Care providers might lose sight of the high medical costs (estimated to be over $1 million per individual lifetime),^6,1 barriers to care, and reduced quality of life people with SCD face. Despite medical advances in treatments such as medications and gene therapy, large discrepancies in both outcomes and mortality rates for people with SCD still remain. One startling national statistic shows that life expectancy for people with SCD is at least 22 years lower than that for people without SCD.⁶ These gaps can be attributed to multiple factors including limited access to comprehensive care.

The effects of SCD on quality of life are often unrecognized. Patients with SCD are more likely than people without SCD to have lost workdays and missed school days because of time spent in the hospital or ED.⁶ The prevalence of depression and anxiety among people with SCD is five times greater than that of the general population.²

Patient experience is linked to their perceptions of quality of care.¹⁰ Many people living with SCD report dissatisfaction with the quality of care they receive. Contributing factors to this dissatisfaction include perceptions of racial discrimination, feelings of being stereotyped as drug seekers who do not have legitimate pain, barriers to accessing specialty care, and lack of clinician comfort with disease management — especially pain.¹⁰

The presence of implicit racial bias in healthcare and perceptions of discrimination are directly linked to negative health experiences.² One example comes from a published study that showed people with sickle cell crisis in the ED waited 50% longer for pain treatment than patients who arrived with long bone fractures.³ In another study of ED wait times, patients with SCD waited an average of two hours longer for initial pain treatment compared to patients without SCD.³

Negative healthcare experiences lead to feelings of mistrust, which result in poor health outcomes. Patients with SCD who report experiences of discrimination are 53% more likely to report nonadherence to physician treatment recommendations.¹⁰ The lack of trusting relationships with healthcare providers correlates to low patient self-efficacy. This is compounded by obstacles related to social drivers of health, which disproportionately affect many individuals living with SCD.

We designed this program in our pursuit to deliver the most comprehensive care, and we believe it can foster close collaboration between HealthKeepers, Inc. and healthcare providers. This joint effort has the potential to address and eliminate the challenges our members with sickle cell disease currently face.

To support this endeavor, HealthKeepers, Inc. is ready to provide essential tools and resources needed to make a positive impact. Our shared commitment can help enhance the healthcare journey for our members.