New law has state taking a closer look at Medicaid treatments for sickle cell disease
TALLAHASSEE, FLA. 1/5/23-Sen. Darryl Rouson, D-St. Petersburg, during the Appropriations Committee on Health and Human Services, Thursday at the Capitol in Tallahassee. COLIN HACKLEY PHOTO

On average 7,328 people with sickle cell disease were enrolled in Florida's Medicaid program last year, which is twice the national average.

There’s a move underway to better understand how Medicaid providers manage sickle cell disease treatment and to determine whether available covered medications, treatment and services are adequate to meet the needs of Medicaid enrollees diagnosed with the disease.

Gov. Ron DeSantis signed SB 1352 into law Monday. Sponsored in the Senate by Sen. Darryl Rouson, the legislation requires the Agency for Health Care Administration to conduct biennial reviews of Medicaid enrollees with sickle cell disease (SCD) and report the findings and recommendations from the analysis to the Governor, legislative leaders, the Office of Minority Health and Health Equity at the Department of Health, and the Rare Disease Advisory Council.

The first report must be submitted by Nov. 1, 2024, and based on data from the preceding two years.

The law places several new requirements on DOH and AHCA.

The bill requires screening providers that detect a sickle cell hemoglobin variant to notify the newborn’s primary care physician and to also submit the information to DOH for inclusion in a sickle cell registry.

DOH is required to contract with a community-based sickle cell disease medical treatment and research center to establish and maintain a registry for newborns and infants identified as carrying a sickle cell hemoglobin variant. The sickle cell registry must track sickle cell disease outcomes. The registry is also required to notify parents or guardians that their child has been included in the registry and to schedule a follow-up appointment. Parents and guardians must be given an opportunity to take their children off the registry if they so choose.

Legislators also agreed to provide DOH with $1 million in recurring funds, $21,355 in nonrecurring funds and $254,408 in salary for five positions to implement the law. AHCA received $250,000 in nonrecurring funds to implement the law.

SCD is a group of inherited red blood cell disorders. Red blood cells contain hemoglobin, a protein that carries oxygen. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone with SCD, the hemoglobin is abnormal, which causes red blood cells to become hard and sticky and look like a C-shaped farm tool called a sickle. The sickle cells die early, causing a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious health complications such as infection, acute chest syndrome and stroke.

SCD is diagnosed with a simple blood test. In children born in the U.S., it is most often found at birth during routine newborn screening tests at the hospital.

SB 1352 comes after lawmakers last year required AHCA to conduct a review of SCD in the Medicaid program. According to a staff analysis on SB 1352, there were 7,328 people with SCD per year, which is twice as high as the national average for Medicaid. The analysis also showed that 58% of the Florida Medicaid SCD population was female, young (median age 18 years), and Black (63%). Geographically, the highest number of Medicaid SCD patients live in Central and South Florida.

AHCA’s review also showed that, over the last four years, 85% of SCD patients in Florida were evaluated and treated in an outpatient clinic, 61% were treated in the emergency room and 52% were hospitalized. SCD-relevant medications were prescribed and filled in 77% of Medicaid SCD patients. Guideline-recommend treatments with penicillin or hydroxyurea were observed in 58% and 22% respectively, of program SCD patients which, according to the staff analysis, indicates a “gap between use and evidence-based treatments.”

Within Florida’s Medicaid SCD population, 54% were determined to be high utilizers of acute care facilities. Their expenditures made up 70% of the total cost of care for the SCD population. There was a slightly higher prevalence of high utilizers in West Florida compared to other regions. Clinical treatment centers specializing in SCD are found predominantly in Central and South Florida.

Christine Jordan Sexton

Tallahassee-based health care reporter who focuses on health care policy and the politics behind it. Medicaid, health insurance, workers’ compensation, and business and professional regulation are just a few of the things that keep me busy.

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