Medicaid provides consistent, early sickle cell disease coverage to newborns

Credit: Christian Bowen / Unsplash

Medicaid programs may be optimally positioned to provide vital, initial care to newborns with sickle cell disease, according to findings from a cohort study.¹

A new research letter published in JAMA Network Open showed that 4 in 5 newborn children with sickle cell disease were enrolled in a Medicaid program within 3 years of life, typically with ≥30 months of consistent coverage. Combined with the fact that Medicaid often provides more coverage to patients with more severe sickle cell-related outcomes than private insurance, the investigators believe that early diagnosis of sickle cell disease combined with Medicaid coverage may improve long-term outcome opportunities for the youngest patients with the blood disorder.

Investigators led by Sophia S. Horiuchi, of the Tracking California Program at the Public Health Institute in Oakland, conducted a cohort analysis designed to assess the patterns of Medicaid coverage among children with sickle cell disease in the first 3 years of their lives. They specifically chose this duration of time given it being a “critical period to improve access to high-quality pediatric care.”

As they noted, US-born infants are generally screened for sickle cell disease via state-based newborn screening (NBS) programs—a strategy that which combined with improved preventive care strategies have led to improved survival rates among patients born with sickle cell disease.

“However, gaps in access to high-quality health care, due, in part, to the persistence of structural and interpersonal racism, have resulted in children receiving inadequate care for the disease,” Horiuchi and colleagues wrote.

Indeed, data show that Black patients are at a significantly greater risk sickle cell crises and disease-related blindness than White patients, while Hispanic patients have a significantly greater risk of sickle cell-related mortality.²

Horiuchi and colleagues identified newborns diagnosed with sickle cell disease from each of California, Georgia, Michigan, North Carolina, and Tennessee, via the respective state’s NBS program. Each of the identified states are included in Centers for Disease Control and Prevention (CDC)-funded Sickle Cell Data Collection public health surveillance program.¹

NBS records were linked to Medicaid enrollment data across each state; investigators assessed monthly enrollment statuses from birth month through 36 months. Among pediatric patients insured by Medicaid during their first 3 years, coverage patterns were assessed as age at first enrollment, total months enrolled, and any interruptions or losses of coverage.

The final assessment included 1273 newborns with sickle cell disease born in any of the 5 states, reported by the NBS programs, between 2015 – 2017. California and North Carolina reported the most cases during the time period, with 246 and 233, respectively. Approximately half (51.2%) of patients were male.

The team reported that 80.7% (n = 1027) were enrolled in Medicaid at some point in the first 3 years of life; among those enrolled in California, median age at first enrollment was 2 months (interquartile range (IQR, 0 – 8). Among the other 4 states, median age at enrollment was 0 months (IQR, 0 – 0). Investigators speculated the delay in California Medicaid enrollment was due to newborns being assigned to their mother’s Medicaid account for the first 60 days—a disparity in state policies.

Median total coverage duration was 33 months for California, and 37 months for the other 4 states. Only 312 (30.4%) children enrolled in Medicaid coverage had interruptions or losses in coverage. Investigators concluded their findings show Medicaid insured a high majority of children living with sickle cell disease for ≥1 month in the first 3 years of their lives.

“Given the high lifetime morbidity and disease-related complications associated with (sickle cell disease), early detection by NBS and subsequent enrollment into health insurance coverage are a public health priority,” the team wrote. “These results emphasize that Medicaid programs are uniquely positioned to enhance early care initiation, ensure consistent coverage, and implement recommended preventive services to improve health outcomes of the pediatric (sickle cell disease) population.”

The team stressed that improving the delivery and overall quality of health care in early life for newborns with sickle cell disease is a key consideration for state Medicaid programs, and should ultimately contribute toward improving long-term morbidity and care costs.

References

1. ^{Horiuchi SS, Reeves SL, Plaxco AP, et al. Medicaid Coverage in Early Childhood for Children With Sickle Cell Disease. JAMA Netw Open. 2024;7(7):e2421491. doi:10.1001/jamanetworkopen.2024.21491}
2. ^{Pokhrel A, Olayemi A, Ogbonda S, Nair K, Wang JC. Racial and ethnic differences in sickle cell disease within the United States: From demographics to outcomes. Eur J Haematol. 2023;110(5):554-563. doi:10.1111/ejh.13936}