September is National Sickle Cell Awareness Month, which calls attention to Sickle Cell Disease (SCD), a genetic disorder that affects about 100,000 Americans according to the National Heart, Lung, and Blood Institute.
Each year, approximately 80 infants are born with SCD in Louisiana. It is estimated that there are approximately 3000 children and adults living with SCD in the state. In the past, the life expectancy for patients living with SCD was not much past the twenties. However, with improved identification and treatment, the life expectancy has greatly improved and patients can live well into their 60s with the proper resources.
Through the Genetic Diseases Program, the Louisiana Department of Health provides resources and information on how individuals diagnosed with sickle cell can receive assistance and care through the Sickle Cell Foundations and Clinics around the state.
The Louisiana Sickle Cell Commission was established as a result of Act 117 (SB57) of the 2013 Regular Legislative Session required the Department of Health and Hospital to form the commission. The functions of the committee are to: 1) Ensure delivery of sickle cell services to affected person in all parishes in Louisiana and assist in establishing geographical service delivery boundaries, 2) Promulgate guidelines for creating uniformity of service delivery to sickle cell patients, 3) Submit budget recommendations to the legislature and the governor, prepare and publish an annual report on sickle cell. For the most recent Commission report, including information on current appointments, click here.
Individuals can contact the Genetic Diseases Program for the Sickle Cell Foundation and Clinic in their region.
Standards for Care
The State of Louisiana Standard for Care of Patients with Sickle Cell Disease Toolkit was developed by Renee Gardner, MD, a pediatric hematologist with LSU Health Sciences Center in New Orleans and the Louisiana Sickle Cell Commission. The goal of the toolkit is to increase and improve access to reduce acute pain and improve chronic pain management. The toolkit is being distributed to pediatricians, family practitioners and other primary care providers to follow as best practices for treating patients with sickle cell disease. Also, the Louisiana Sickle Cell Commission is planning a statewide conference for June 2017 to provide more insight regarding the disease and transitional services for youths and adults. The pdf version of the Standard for Care can be viewed here
Through the Genetic Diseases Program, The Louisiana Department of Health provides resources and information on how individuals diagnosed with sickle cell can receive assistance and care through the Sickle Cell Foundations and Clinics around the state. Individuals can contact the Genetic Diseases Program for the foundation and clinic in their region.
Regional Sickle Cell Clinics & Foundations
Sickle Cell Brochures