Agency review and report on medications, treatments, and services for sickle cell disease.

(1) The Agency for Health Care Administration, in consultation with the Florida Medical Schools Quality Network and a dedicated sickle cell disease medical treatment and research center that maintains a sickle cell patient database and tracks sickle cell disease outcome measures, shall, every 2 years:

(a) Conduct a review to determine whether the available covered medications, treatments, and services for sickle cell disease are adequate to meet the needs of Medicaid recipients diagnosed with such disease and whether the agency should seek to add additional medications, treatments, or services to improve outcomes.

(b)1. Develop a written report that details the review findings.

2. Beginning November 1, 2024, and by November 1 of every other year thereafter, post the report on the agency’s website.

3. Submit a copy of the report to the Governor, the President of the Senate, the Speaker of the House of Representatives, the Department of Health’s Office of Minority Health and Health Equity, and the Rare Disease Advisory Council.

(2)(a) The report developed under subsection (1) must be based on the data collected from the prior 2 years and must include any recommendations for improvements in the delivery of and access to medications, treatments, or services for Medicaid recipients diagnosed with sickle cell disease.

(b) The report must provide detailed information on Medicaid recipients diagnosed with sickle cell disease, including:

1. The total number of Medicaid recipients diagnosed with sickle cell disease.

2. The age and population demographics of the Medicaid recipients diagnosed with sickle cell disease.

3. The health care utilization patterns and total expenditures, both pharmaceutical and medical, for services provided by Medicaid for all Medicaid recipients diagnosed with sickle cell disease.

4. The number of Medicaid recipients diagnosed with sickle cell disease within the general sickle cell patient population who have experienced two or more emergency room visits or two or more hospital inpatient admissions in a 12-month period, including length of stay, and the expenditures, both pharmaceutical and medical, for those Medicaid recipients.

5. The number of clinical treatment programs available for the care of Medicaid recipients diagnosed with sickle cell disease which are specifically designed or certified to provide health care coordination and health care access for individuals diagnosed with sickle cell disease and the number of those clinical treatment programs, per region, with which managed care plans have contracted.

6. An assessment of the agency’s existing payment methodologies for approved treatments or medications for the treatment of sickle cell disease in the inpatient setting and whether such payment methodologies result in barriers to access. If barriers to access are identified, the report must include an assessment of whether such methodologies may be modified or improved through the adoption of new or additional policies.