More than 8,000 people in Florida suffer from sickle cell disease, an inherited blood disorder that causes chronic pain, strokes and shortened life expectancy. The disease occurs in about one in every 365 African American births and one in every 16,300 Hispanic American births.
Yet, this major health crisis that forces many patients into a lifetime of disability has not been given the attention it needs.
While promising new, potentially curative sickle cell treatments are in development, there is currently no cure other than risky stem cell or bone marrow transplants that carry serious side effects and risk of death.
Given that this patient population is majority African American, systemic racial biases in health care prevent sickle cell disease from getting the attention it deserves.
Health care providers often wrongly assume those suffering from the disease exaggerate their symptoms to receive drugs, and few providers are knowledgeable enough on sickle cell to provide adequate care.
The Centers for Disease Control and Prevention (CDC) reports that patients with sickle cell “have less access to comprehensive team care than people with genetic disorders such as hemophilia and cystic fibrosis.”
A glaring difference here is that those diseases have majority White patients.
Medicaid coverage also plays a role in widening the care gap between sickle cell and other rare diseases. Nearly half of people with sickle cell are enrolled in Medicaid. The severity of sickle cell means many patients do not live long enough to qualify for Medicare and are forced to spend so much time in the hospital managing their symptoms that they cannot gain employer-sponsored insurance through a job.
As patients must depend on state Medicaid programs to continuously evaluate their treatment coverage options, we need to ensure Florida’s Medicaid system is adequately meeting the needs of sickle cell patients.
Dr. Marilyn Hughes Gaston, the first Black woman to direct the Bureau of Primary Health Care in the U.S., laid the foundation with her dedicated research showing an early screening of infants for sickle cell allows for early detection and control of the disease. That’s why I sponsored legislation to dedicate more resources to finding ways to eradicate this disease.
This year, a modest amount of funding was approved by the Florida Legislature and signed into law by Gov. Ron DeSantis to review the care provided to patients with sickle cell disease through our state’s Medicaid program. That means the Agency for Health Care Administration, the Florida Medical School Quality Network, and a dedicated sickle cell disease treatment and research center will now review and report on population demographics, health care utilization, emergency room and hospital inpatient visits, and the number of clinical treatment programs available for Medicaid enrollees with sickle cell disease.
As a strong proponent for increased resources and access to care for individuals with sickle cell disease, I am proud to see this critical first step in shining a light on sickle cell.
However, there is more work to be done. Florida must implement policies to ensure sickle cell patients have immediate access to innovative treatments and relief from this cruel disease.
Rep. Kamia Brown serves District 45 in the Florida House.