About Sickle Cell Disease

What is Sickle Cell Disease?

Sickle cell disease (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 who has SCD, the hemoglobin is abnormal, which causes the red blood cells to become hard and sticky and look like a C-shaped farm tool called a “sickle.” The sickle cells die early, which causes 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 complications (health problems) such as infection, acute chest syndrome, and stroke.

Living with Sickle Cell Disease

Individuals living with SCD experience worse health outcomes and have access to fewer resources, compared to individuals living without SCD. They experience a shorter life expectancy, have the highest rate of returning to the hospital within 30 days of being discharged, experience a higher rate of stroke, and experience longer wait times to see a doctor and get pain medication. Further, most patients with SCD nationally are enrolled in Medicaid, and a limited number of clinicians are trained and willing to treat patients with SCD, so obtaining high quality healthcare services can be a significant challenge.

Sickle Cell Disease in Louisiana

Approximately 80 infants are born each year in Louisiana with sickle cell disease (SCD). Louisiana Medicaid provides healthcare coverage to approximately 3,000 individuals living with SCD in the state each year. However, the true number of individuals living with the condition is unknown because there currently is no comprehensive population-level public health monitoring system in the state. 

Sickle Cell Disease Policy in Louisiana

Nationally and in Louisiana, SCD is being recognized as a health issue that is overdue for investment and policy action. In 2020, the National Academies of Sciences, Engineering, and Medicine released Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, illuminating systemic factors affecting equitable and effective care, treatment, and support for individuals living with SCD and sickle cell trait (SCT). The report highlighted societal and structural contributors to disease impact, such as lack of public awareness and misinformation. The report also highlighted the need for patient registries and public health monitoring systems as a foundation to improving clinical care and quality of life. Legislative actions in Louisiana in 2021 and 2022 echoed elements of the calls to action in the national strategic plan, many of which have been championed by the statutorily established Louisiana Sickle Cell Commission and the state’s sickle cell foundations, community-based organizations established to provide supportive services to people living with SCD.

LDH Initiative to Improve Systems to Support People Living With Sickle Cell Disease

The aim of this initiative in the FY23 business plan is to build the foundations for the systems to monitor the health of individuals with SCD and strengthen the ability of our care systems to support every person living with SCD to achieve their fullest health potential. The goal of this initiative is to complete the foundational assessment and engagement activities needed to develop the state sickle cell registry.

In response to Act No. 647 of the 2022 Regular Session of the Louisiana Legislature, the Louisiana Department of Health, Office of Public Health, Bureau of Family Health has been charged to develop the Louisiana Sickle Cell Disease (SCD) Registry, known as the Skylar-Cooper Database. As a first step, the SCD registry steering committee conducted a foundational assessment and provided preliminary recommendations to guide the development of the registry. The report may be found below: 

As a second step, a public input survey was posted to the BFH website to allow for feedback on the preliminary report and recommendations. The report below provides an overview of the survey responses and outlines the next steps in the development of the sickle cell registry. Please click the link below to view the report:

LDH will also develop and implement a statewide public information campaign to educate those who live with SCD, as well as those who are instrumental in the systems and touchpoints that support an individual’s quality of life, such as caregivers, parents, school personnel, and healthcare providers.

For more information about how the Louisiana Department of Health, Office of Public Health, and Bureau of Family are working to improve the lives of those living with Sickle Cell Disease, please visit the LDH Business Plan FY 2023.

For more information about SCD, including diagnosis, complications, and treatment, click here.

The Louisiana Genetics Diseases Program

The Louisiana Department of Health’s Bureau of Family Health runs several programs that focus on genetic diseases and their impact on babies, children, and families. These programs are grouped together within the Louisiana Genetic Diseases Program. Together, they work to make sure that people know if they or their children have a genetic disease as early in life as possible and that people with genetic disorders get the treatment, information, and other services they need. Program activities include:

    • Newborn heel stick screening and follow-up for all children born in Louisiana
    • Genetics lab testing
    • Genetic evaluation and counseling available at clinics across the state
    • Specialized Sickle Cell Clinics available in each region of the state
    • Referral of cases into specialized medical care

 Please click the button below for more information about the Genetics Diseases Program, including News and Updates and Advisory Committee Meetings:

 

Sickle Cell Disease Program

 The Sickle Cell Program works to help diagnose and treat sickle cell disease in babies as early as possible. They connect people diagnosed with sickle cell to resources, medical care and other services through the Sickle Cell Foundations and Clinics around the state. This program also oversees the Louisiana Sickle Cell Commission, which is mandated by Act 117 (SB57) of the Louisiana State Legislature.

Find the latest report here.

Resource for Healthcare Providers

The Louisiana Standard for Care of Patients with Sickle Cell Disease serves as a best practices guide for treating patients with sickle cell disease. It 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.  

Resources for Patients and Families

We provide resources and information for people diagnosed with sickle cell on how to receive assistance and care through the Sickle Cell Foundations and Clinics around the state. Contact the Genetic Diseases Program for the foundation and clinic in your region for help.

 

Upcoming Events

September 2023:

  • Northeast Louisiana Sickle Cell Anemia Foundation 42nd Annual Banquet: Join NELASCAF for their 42nd Annual Banquet on Thursday, September 14th in Monroe, LA. Click here for more information.
  • Sickle Cell Anemia Resource Foundation 24th Annual Fighting for the Cause Sickle Cell Gala: Join SCARF for their 24th Annual Gala on Friday, September 15th in Alexandria, LA. Click here for more information.
  • Sickle Cell Anemia Resource Foundation Blood Drive: Support sickle cell warriors on Saturday, September 16th at SCARF’s blood drive in Alexandria, LA. Click here for more information.
  • Ryan’s Run/Walk for Sickle Cell Disease: Register now for this race with the Sickle Cell Association of South Louisiana on Saturday, September 16th in Baton Rouge, LA. Click here for more information.
  • Shine the Light on Sickle Cell Anemia Musical: Join the Sickle Cell Disease Association of America and the Etta Pete Sickle Cell Anemia Foundation in memory of Etta Pete on Monday, September 18th in Lake Charles, LA. Click here for more information.
  • Sock it to Cancer and Save Lives Blood Drive: Donate on Tuesday, September 19th and receive free socks while supplies last in Baton Rouge, LA. Click here for more information.
  • Drive Up and Drive Off Sickle Cell Fundraiser Radio-thon: Saturday, September 23rd in Shreveport, LA. Click here for more information.

Coming Soon:

Other: 

 

Additional Resources

Click here to find information on the Louisiana Sickle Cell Commission, including meeting dates, agendas, and minutes. 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.