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September Marks Sickle Cell Disease Awareness Month in Texas
September 1, 2022
In 2019, the Texas Legislature designated September as Sickle Cell Disease (SCD) Awareness Month to shine a light on this hereditary blood disorder. September is also National Sickle Cell Awareness Month.
As awareness grows, so does the capacity to help Texans living with the disorder.
According to the Centers for Disease Control and Prevention, SCD causes the body to produce crescent or sickle-shaped red blood cells. These cells have difficulty passing through small blood vessels and block normal red blood cells from entering tissue. Parts of the body that don’t receive normal blood flow eventually become damaged. Complications can include anemia, vision loss, chronic pain, deep vein thrombosis, infection, pulmonary embolism and stroke.
Approximately 180–200 babies are diagnosed with SCD every year, according to the Texas Newborn Screening program. Approximately 6,000 babies are born with sickle cell trait (SCT) each year. This means they inherited one sickle cell gene and one normal gene. These babies do not have SCD and generally lead normal lives but can pass the sickle cell gene to their future children.
If both parents have SCT (each has one sickle cell gene), with each pregnancy the odds of having a child with SCD is 25%, SCT is 50%, and no gene variant is 25%.
Newborn Screening for SCD
In 1983, the Texas Newborn Screening Program began screening newborns for SCD. Blood samples are collected from a heel stick done 24 to 48 hours after birth and again at 1 to 2 weeks of age. The samples are sent to the DSHS Laboratory for screening. Symptoms of SCD usually appear when an infant is around 5 months old. Early diagnosis helps parents access information and specialty health care for their child.
In Texas, approximately one out of every 2,000 newborns has SCD. SCD predominantly affects Black families, who make up an average of 85% of cases in Texas over the last few years. Hispanics account for about 5%, and other ethnicities combined make up the other 10%.
SCD worsens over time. Evolving treatments can decrease complications and improve a person’s life. These treatments include stem cell transplantation, gene therapy and new drugs approved by the Food and Drug Administration.
“This is an exciting time for people living with sickle cell disease,” said Dr. Melissa Frei-Jones, vice chair of the DSHS Newborn Screening Advisory Committee and member of the Sickle Cell Task Force. “We now have three new medications, in addition to hydroxyurea, and our understanding of potentially curative therapies, such as bone marrow transplant, and gene therapy is rapidly growing. However, it is important to not lose sight of the significance that less than five years ago, this disease, which affects more than 100,000 Americans, only had one approved medication. We must continue to raise awareness of sickle cell advocating for increased research funding, access to comprehensive medical care and improved quality of life.”
To learn more about SCD, watch this video featuring Dr. Titilope Fasipe and visit the DSHS Sickle Cell Disease and Centers for Disease Control and Prevention Sickle Cell Disease webpages.
To read more about new therapies, access this journal article in the medical journal Ethnicity & Disease and this article in the Mediterranean Journal of Hematology and Infectious Diseases.
What is Sickle Cell Disease and how can you support individuals with this disorder?
Dr. Titilope Fasipe, MD, Ph.D., breaks down these questions and more. Dr. Fasipe is the Co-Director of the Sickle Cell & Thalassemia Program at Texas Children’s Hospital and Assistant Professor at Baylor College of Medicine. She is also a DSHS Newborn Screening Advisory Committee member and the Sickle Cell Task Force Chair.
Texas Now Screening for Spinal Muscular Atrophy (SMA)
The Newborn Screening Program began screening for SMA on June 1, 2021. SMA is a rare neuromuscular disorder that results in the loss of motor neurons and progressive muscle wasting. SMA is among the leading genetic causes of death in infants and toddlers.
Information about the disorder can be found in the attachments and links below:
Newborn Hearing Screening Rules Update
Texas Health and Safety Code, Chapter 47, was amended by House Bill 2255
and Senate Bill 1404, 86th Legislature, Regular Session, 2019. The existing
rules for Newborn Hearing Screening in Texas Administrative Code Title 25,
Chapter 37, Subchapter S will be repealed entirely and replaced with new rules.
Due to the changes in statute, a draft consent form is being considered to
ensure consent is documented. Please visit the TEHDI website to learn more.
COVID-19 and Newborn Screening
During this time of extraordinary challenge, the DSHS
Newborn Screening (NBS) Program appreciates the dedication and commitment of healthcare
providers to ensure the best possible outcomes for Texas newborns. Please visit our COVID-19 frequently asked questions page for important information.
Nurses and PHPS Help to Save Babies Lives 
Once an abnormal test result is received, Texas Department of State Health Services nurses and public
health and prevention specialists (PHPS) work diligently to ensure that babies
receive follow-up care. Read about a few babies whose lives were saved because
of newborn screening.
Newborn Screening Videos: Review Proper Procedures and Helpful Tips
Each step in the process of completing and submitting the blood spot card (or collection kit) can be critical to a baby's life.
Newborn screening blood specimen collection video (5 minutes) demonstrates the proper procedure for collecting a newborn screen blood specimen. It also provides a few collection tips and shows some things to avoid.
Newborn screening follow-up video (4 minutes) guides medical providers on how they can help after an abnormal screening result is received. It reviews the primary steps taken by newborn screening follow-up staff. Because some babies can have a medical crisis, it is important to notify families and medical personnel as soon as possible.
Collection kit completion video (5 minutes) shows how to properly complete each section of the blood spot collection kit. Incorrect or missing information can cause delays, specimen rejection, or incorrect evaluation of test results.
Collection kit submission video (5 minutes) reviews the process for preparing and shipping specimens to the state laboratory. Timely submission of the blood spot kit is as important as completing the kit correctly and obtaining a good quality specimen.
More About Proper Specimen Collection:
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Every Minute Counts: Timely Blood Samples Save Babies Lives
Texas newborns are screened through a test from a few drops of blood on a card. For many of these conditions, every minute counts. That's why it is critical that the state laboratory receives the properly completed blood spot cards as soon as possible.
More Than Drops On a Card video (5 minutes) features two Texas families. They share their stories of the importance of collecting timely, good quality specimens.
Free Educational Materials
The Newborn Screening Program provides educational materials at no cost. Brochures and other publications are available in English and Spanish for healthcare providers, parents, and medical staff. To view and order free publications related to:
You also can call (512) 776-3957 to order publications.
Cytomegalovirus: A Common Cause of Hearing Loss in Children
Cytomegalovirus (CMV) is a common viral infection. Most people have been infected with CMV by the time they are adults. If the CMV infection occurs for the first time during pregnancy, especially early in pregnancy, the developing fetus may have birth defects including being deaf or hard of hearing.
Read more about CMV.
Newborn Screening for Critical Congenital Heart Disease in Texas
Reporting babies diagnosed with Critical Congenital Heart Disease (CCHD) is mandatory in Texas since September 2014. Learn more about CCHD including viewing the CCHD reporting form and frequently asked questions. The CCHD toolkit provides educational information on screening for CCHD.
Newborn Screening Training: In-Person and Webinar
The Newborn Screening (NBS) program offers in-person and live webinar trainings. These educational trainings are designed to provide general information on the NBS program, genetic disorders screened in Texas, specimen collection, the importance of early detection and treatment, and resources available to assist healthcare providers participating in newborn screening.
- In-person training is generally for audiences of 15 or more. Email nbs.education@dshs.texas.gov to schedule in-person training for your organization.
- Webinar training is for small to mid-size groups. The online presentation allows participants to view documents and applications electronically from any computer. During the webinar, participants can ask questions. Email nbs.education@dshs.texas.gov to schedule a webinar training for your organization.
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External links to other sites are intended to be informational and do not have the endorsement of the Texas Department of State Health Services. These sites may not be accessible to people with disabilities.