Sickle cell disease requires the same resources and attention as other chronic diseases

Every Floridian struggling with a rare health condition deserves access to quality healthcare services to meet their needs. These patients and their families deal with so much already, from managing painful symptoms to coordinating care and paying for medical expenses. They should not be left to worry about basic access to the treatment they need.

Unfortunately, an often-overlooked population is worrying, and it is time to shine a spotlight on their needs. Each year, 2,000 babies are born with sickle cell disease in the U.S., and over 8,000 Floridians suffer from this disease. Sickle cell disease leads to chronic and unpredictable pain and comes with other severe symptoms that are difficult to manage, including blindness, frequent infections, anemia, and kidney disease. 

Sickle cell disease significantly compromises the overall health outcomes of patients in Florida and across the country. The average life expectancy for those with the most severe cases of sickle cell is three decades shorter than the life expectancy of people without it. These patients also have the highest rate of return to the hospital within a month of discharge when compared to other health conditions.

Even though sickle cell is such a severe disease, patients struggle to access quality healthcare. Partially to blame is the racial breakdown of sickle cell patients and the unfortunate racial biases in our healthcare system. This patient group is over 80% African American and Hispanic American, impacting one in 16,300 Hispanic births and one in 365 African American births. They deserve access to care just as much as any other patient.