How A Rare Condition Can Fuel Medicaid Spending, Utilization

Medicaid spending on sickle cell disease treatment and patient outcomes among beneficiaries with sickle cell disease reveal gaps in health equity and opportunities for improving care for super-utilizers of healthcare, according to a Manatt Health report.

Sickle cell disease primarily impacts patients who can trace their ancestry back to sub-Saharan Africa and regions with regular malaria outbreaks.

“Deficiencies in quality of care for the population with SCD are well-documented and include poor access to knowledgeable health care providers, inadequate treatment of the disease’s effects on the body and of associated pain, and discrimination,” the researchers wrote.

Historically, Medicaid has been a key source of coverage for the community of patients with sickle cell disease, covering two-thirds of all hospitalizations related to sickle cell disease in 2004. Medicaid beneficiaries with sickle cell disease also tend to stay in Medicaid longer, with 74 percent of beneficiaries still being enrolled in Medicaid after at least three years.

The researchers argued that understanding the role that Medicaid plays in covering the needs of patients with sickle cell disease is increasingly important as gene therapies emerge that could revolutionize care for patients with sickle cell disease.

The researchers drew their data from Medicaid Analytic eXtract (MAX) and analyzed four states: California, Florida, New York, and Texas.

Across the states in the study, Medicaid beneficiaries with sickle cell disease had high care utilization rates and high healthcare spending. From 45 percent to 62 percent of the population experienced inpatient stays. Nearly seven to eight out of ten beneficiaries with sickle cell disease experienced an outpatient emergency department visit.

Medicaid beneficiaries with sickle cell disease saw around $24,800 in medical bills in Florida. In contrast, the average Medicare beneficiary spent $4,200. Beneficiaries with sickle cell disease in Florida spend five times as much as the average Medicaid beneficiary without sickle cell disease.

In California, 15 percent of Medicaid beneficiaries with sickle cell disease experienced four inpatient stays or more in a single year in 2011. These California beneficiaries spent over $100,000. This population was likely to stay enrolled in the Medicaid program for four years and their healthcare spending costs averaged around $298,000.

This high level of healthcare spending does not necessarily prevent a high mortality rate. For example, in Texas, researchers found that the mortality rate for this population was nine times the age-adjusted rate for the overall population. California’s population with sickle cell disease had the lowest mortality rate, which was still 3.6 times higher than the rest of the state.

Additionally, the researchers discovered that in California Medicaid beneficiaries with sickle cell disease are seven times more likely to be eligible for Medicaid due to a disability factor.

“Gene therapies currently under development to address the genetic cause of SCD may have durable clinical effects and could significantly change the current standard of care for people with SCD. As a result of the potential long-term benefits of these therapies, questions of appropriate coverage and reimbursement as well as expected outcomes will be at the forefront for Medicaid and other payers,” the researchers concluded. 

“Because Medicaid plays a substantial role in covering the cost of care for patients with SCD, state and federal officials will need to understand how the disease currently affects beneficiaries.”

Payers have been looking for ways to cut gene therapy healthcare spending in order to better serve member populations like those who have sickle cell disease. Some have endeavored to use value-based contracts in order to trim down costs.

Although the report did not dive into the ways in which value-based contracting can impact small populations with high costs like the population of beneficiaries with sickle cell disease, previous research has indicated that managed care organizations—such as those in Medicare Advantage—can deliver quality care for high-need, high-cost populations.