Patients With Sickle Cell Disease Less Likely to Receive Specialized Care

A recent analysis of Medicaid claims data found that individuals with sickle cell disease are seeing hematologists at a lower rate than patients with other chronic genetic diseases.

While the life expectancy of individuals with sickle cell disease (SCD) has improved significantly over time, the cumulative effects of SCD over time can still negatively impact quality of life for many of these patients and lead to greater health care utilization. Comprehensive care is crucial to mitigate SCD, but a recent analysis of Medicaid claims data found that individuals with SCD are seeing hematologists at a lower rate than patients with other chronic genetic diseases. 

A research letter published in Blood Advances first highlighted the barriers to sufficient SCD care and the potential effects the disease can have on patients. Over time, SCD can lead to high health care utilization and symptoms such as pain episodes, anemia, risk of organ damage, and stroke. Long-term quality care can improve outcomes, but there are significant disparities in health care availability for Black patients and other patients of color, particularly adults, compared with other populations.

“While comprehensive care for children with SCD is not universally available, there are centers providing such care in most US urban areas,” the authors noted. “Health care providers specializing in non-malignant hematology for adults, however, are rare. Upon transitioning out of pediatric care, adults encounter a dearth of providers knowledgeable in SCD and a fragmented healthcare system.”

Identifying and addressing barriers to care in health care overall has become a priority in recent years, and various models have been proposed to make SCD care more accessible for all patients. Despite the identification of barriers and challenges, the portion of the SCD population that still goes without sufficient care is unknown.

Researchers retrospectively analyzed Medicaid claims for individuals with SCD using data from the Sickle Cell Data Collection (SCDC) program, a state-based, population-wide public health surveillance system for SCD. The analysis included SCDC data from California and Georgia, both states with large populations of SCD patients, and aimed to quantify how often individuals living with SCD saw hematologists.

Inclusion criteria included continuous Medicaid enrollment from 2016 through 2018. A total of 989 pediatric patients and 1919 adult patients in CA fit the criteria; and 1711 pediatric patients and 1373 adults in GA were included. In CA, 24% of pediatric and 56% of adult patients had no encounters with a hematologist over the study period. In GA, 13% of pediatric and 34% of adult patients had no hematologist encounters.

Whether the providers these patients encountered are well-versed in SCD specifically is unknown. While the National Heart, Lung and Blood Institute’s SCD Implementation Consortium defines SCD specialists with certain criteria, data on these criteria are not available.

Encounters with experienced primary care providers (PCPs) were also quantified in the study. Of the pediatric patients who did not encounter hematologists, 10% in CA and 36% in GA were seem by experienced PCPs. In CA and GA, 18% and 37% of adults were seen by experienced PCPs, respectively. A total of 46% adults in CA and 21% of adults in GA with SCD did not see a hematologist or experienced PCP during the study period.

The findings overall are in contrast to recent research on care for other chronic conditions, such as cystic fibrosis and hemophilia. Another study found that in a 3-year period, 82% of individuals with hemophilia and 94% of individuals with severe hemophilia received care at federally funded and specialized centers. No such system exists for SCD, despite it being more than twice as prevalent as hemophilia.

While limited by reliance on Medicaid data, the study provides new insight into disparities in care. “There is an opportunity for this patient population to be brought into quality care settings to effectively manage their disease and prevent complications and mortality,” the authors wrote.


Horiuchi SS, Zhou M, Snyder A, Paulukonis S. Hematologist encounters among Medicaid patients who have sickle cell disease. Blood Adv. Published online July 12, 2022. doi:10.1182/bloodadvances.2022007622

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