DHEC Emphasizes Community Awareness, Blood Donations for World Sickle Cell Day
FOR IMMEDIATE RELEASE:
June 19, 2023
COLUMBIA, S.C. — World Sickle Cell Day is June 19, and the South Carolina Department of Health and Environmental Control (DHEC) is observing the day by educating the community and public about the available resources and services for individuals and families living with sickle cell disease and by asking more residents to make life-saving blood donations.
Sickle cell disease (SCD) is an inherited blood disorder caused by abnormal hemoglobin, a protein that carries oxygen, on red blood cells. While healthy red blood cells with normal hemoglobin are round and easily move through even the smallest blood vessels to carry oxygen to all parts of the body, individuals with SCD have some red blood cells that are hard, sharp and shaped like a crescent moon as a result of the abnormal hemoglobin. These cells die early, resulting in anemia, a condition with low levels of normal red blood cells carrying oxygen, or can get stuck in small blood vessels causing complications such as blood clots, extreme pain and organ damage.
To assure access to quality preventive, primary care and specialty services for people with sickle cell disease, DHEC offers the following services:
- The Children and Youth with Special Health Care Needs (CYSHCN) Program partners with the Newborn Screening (NBS) Program to provide ongoing follow-up and care coordination for children who have an abnormal screening for sickle cell disease on their newborn screening panel, and
- The Sickle Cell Program helps eligible patients who have sickle cell disease pay for medical services, supplies, equipment and prescription medications. The program also offers care coordination as well as nursing, nutrition and social work consultation as needed.
“Research shows that limited access to healthcare can lead to increased morbidities, poor quality of life and the increased likelihood of mortality for people with sickle cell disease,” said Malerie Hartsell, Blood Disorders & Contracts Program Manager in DHEC’s Division of Children and Youth with Special Health Care Needs. “These programs are essential in removing the burdens many individuals face in seeking quality healthcare services.”
DHEC and the South Carolina Sickle Cell Disease Advocacy Team partnered to create the Sickle Cell Disease State Plan to address the care and treatment of those living with the disease. As part of the plan, DHEC created a resource to assist those transitioning from pediatric care to adult care.
The guide aims to help young adults get more involved with their care to better navigate the healthcare system and prevent a decrease in quality of care or a breakdown in care coordination.
“Individuals who have sickle cell disease are living longer due to improvements in healthcare and treatments,” Hartsell said. “Continuing your routine healthcare visits and having a transition plan in place helps to increase your independence, minimize the risk of your treatment plan being interrupted and improves your overall quality of life.”
DHEC recently announced plans for a voluntary registry system for patients diagnosed with sickle cell disease to help patients and healthcare providers make informed treatment decisions and improve outcomes for patients in South Carolina.
In addition to SCD, there is a condition called sickle cell trait (SCT), which occurs when a person gets one sickle cell gene from one parent but the copy of the gene they receive from the other parent is normal. People with SCT usually do not have any signs of the disease, but it can be passed on to their children.
While persons with sickle cell trait usually live a normal life, there are rare cases where extreme conditions such as severe dehydration and high-intensity physical activity can lead to serious health issues, such as pain crises, for people with SCT.
DHEC also encourages South Carolinians to donate blood, since blood transfusions are one of the most critical treatments for sickle cell patients and literally save lives. Donations are strongly encouraged from those in the African-American community since transfusions from people of the same race are more likely to be a match. Visit the American Red Cross site to find a location to donate.
Visit the Sickle Cell Disease Association of America for more information on national efforts.