Sickle Cell Hospitalizations Are Getting More Severe—And Where Patients Live Matters

Emerging data published in JAMA Network Open found significant geographic and temporal disparities in outcomes following hospitalization due to sickle cell disease (SCD) in New York State over more than a decade. Hospitalizations increasingly reflected higher severity of illness and mortality, with the highest levels displayed in 2022. These data shed light on persistent gaps in accessibility to specialized care and the growing need for region-specific interventions.¹

SCD and Unmet Needs

In the US, SCD is the most frequently inherited blood disorder, impacting approximately 100,000 individuals and disproportionately affecting racial and ethnic minority populations. Patients with SCD commonly experience chronic hemolytic anemia, vaso-occlusive crises, and progressive organ damage, causing patients to seek consistent hospitalizations and substantial health care utilization.^2,3

There have been significant treatment advances for patients with SCD, such as the development of disease-modifying therapies, namely hydroxyurea (Hydrea; Bristol Myers Squibb). However, many patients—notably adults transitioning from pediatric care—struggle with complications, including limited access to necessary specialists, inconsistent treatment use, and reliance on acute care services. These conflicts contribute to increased morbidity, mortality, and economic burden, especially in underserved regions.^4,5

Study Design

Data from the retrospective cross-sectional study utilized the New York State SPARCS (Statewide Planning and Research Cooperative System) database to form an analysis on inpatient SCD hospitalizations between 2009 and 2022. The research focused on outcomes including regional distribution of hospitalizations, length of stay (LOS), total charges, and trends in severity of illness and risk of mortality using the All Patient Refined Diagnosis Related Groups (APR-DRG) system.¹

A total of 42,271 hospitalizations were analyzed following exclusions for missing data. The data reveal that patients were predominantly Black (83.6%) and ranged in age from 18 to 49 years, which emphasizes known epidemiologic patterns of SCD.¹

Key Findings

Across New York State, significant regional variation was observed. The majority of hospitalizations in this study (66.1%) were accounted for by New York City, Central New York, and the Hudson Valley, which reported the longest mean LOS between 6.2 and 6.3 days. The highest mean for total charges per hospitalization was reported by patients on Long Island, with costs surpassing $59,000.¹

The most pertinent finding was the substantial increase in disease severity and mortality risk over time. In cases where hospitalization was classified as major, severity rose from 12.7% in 2009 to 27.3% in 2022. During this same time period, the major risk of mortality significantly increased from 2.9% to 12.6%.¹

The regional differences in this analysis were strongly evident. The highest proportion of hospitalizations with major mortality risk (9.6%) resided on Long Island, in contrast to New York City, where, despite the high volume of patients, there was a relatively lower mortality risk (5.5%). These data highlight differences in patient demographics, access to care, and health system resources across regions.¹

Clinical Implications

The increase in severity and mortality risk found in this study may reflect a collective disease burden as time progresses and patients age, as well as disruptions in care delivery during the COVID-19 pandemic. Notably, the delayed disease management and more severe presentations at hospitalization were likely due to disparities in access to hematology specialists and disease-modifying therapies.^4,6

The regional variation in LOS and costs further demonstrates differences in care delivery and resource utilization. Regional health systems with patients who have longer hospital stays and higher costs may be managing more complex cases or experiencing inefficiencies in care coordination.¹

Pharmacy Practice Relevance

It is vital to assist patients in medication optimization, as such counseling, including appropriate use of hydroxyurea and newer therapies, may reduce vaso-occlusive crises and hospitalizations. Practitioners may guide patients to improve adherence, provide patient education, and support transitions of care, particularly for young adults at high risk of increased health care utilization.⁴

For pharmacists who practice in high-burden regions, it is essential to stay aware of disparities in access to specialized care to better comprehend what the patient needs for their SCD management. Pharmacists have the accessibility to monitor for complications and ensure appropriate pain management strategies are implemented.

REFERENCES

1. Iloegbu C, Odumegwu J, Gyamfi J, et al. Geographic and temporal differences in sickle cell disease hospitalizations in New York State. JAMA Netw Open. 2026;9(5):e2610045. doi:10.1001/jamanetworkopen.2026.10045

2. Sickle cell disease (SCD). CDC. Accessed May 4, 2026. https://www.cdc.gov/sickle-cell/index.html

3. Kato GJ, Piel FB, Reid CD, et al. Sickle cell disease. Nat Rev Dis Primers. 2018;4:18010. doi:10.1038/nrdp.2018.10

4. Yawn BP, Buchanan GR, Afenyi-Annan AN, et al. Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members. JAMA. 2014;312(10):1033-1048. doi:10.1001/jama.2014.10517

5. Lanzkron S, Carroll CP, Haywood C Jr. Mortality rates and age at death from sickle cell disease: U.S., 1979-2005. Public Health Rep. 2013;128(2):110-116. doi:10.1177/003335491312800206

6. Panepinto JA, Brandow A, Mucalo L, et al. Coronavirus disease among persons with sickle cell disease, United States, March 20-May 21, 2020. Emerg Infect Dis. 2020;26(10):2473-2476. doi:10.3201/eid2610.202792