Key takeaways:
Because sickle cell disease is genetic, it’s important to know if you and your partner have the sickle cell genetic trait before you have children.
Without insurance, a sickle cell test can cost less than $100.
A sickle cell test may be covered for adults with employer-based health insurance, Medicaid, or Affordable Care Act marketplace plans.
Sickle cell disease (SCD) is a red blood cell disorder that affects an estimated 100,000 people in the United States. SCD — also known as “sickle cell anemia” — is common among African Americans. This genetic condition affects 1 out of every 365 Black births in the U.S. and 1 out of every 16,300 Hispanic American births.
A baby can be born with SCD if they inherit the sickle cell trait, or sickle cell gene, from both parents. The trait is more common than SCD. One in every 13 Black babies born in the U.S. has the trait.
SCD causes red blood cells to be irregularly shaped. This leads to less oxygen moving throughout the body and can cause debilitating symptoms. SCD can cause a sickle cell crisis, which might involve severe pain, infection, and even stroke.
SCD is most common in people who have sub-Saharan African ancestry. The condition is also common among people with ancestry from:
Caribbean countries
Central America
India
Mediterranean countries such as Greece, Italy, and Turkey
Saudi Arabia
South America
There is widespread newborn screening for sickle cell, but there is no routine sickle cell trait testing for adults.
Finding out whether you have the sickle cell trait requires a blood sample. This is important information to know before you have kids, since you can pass it on to your children. And if both parents have the trait, their child can develop SCD. If both parents have the sickle cell trait, their biological offspring have a:
50% chance of inheriting the trait
25% chance of having SCD
25% chance of not having the trait nor SCD
An estimated 1 to 3 million people in the U.S. have the sickle cell trait.
Without insurance, a sickle cell test typically costs less than $100. Let’s look at the prices for labs across the country:
MDsave, a price-shopping tool for people without insurance and those who have high-deductible health plans, lists national and regional price ranges for a sickle cell screening. Without insurance, the estimated national average for this test is $26.
Quest charges $55 for a sickle cell anemia test with reflex. This includes $49 for the test and a $6 physician’s fee. You can order and pay for the test online, but you must schedule an appointment and visit a Quest patient services center for the blood draw. You must be at least 18 years old to order the test, which is not available in all states. You can access test results online.
Testing.com offers 2 blood screenings for sickle cell. The hemoglobin solubility test costs $89. A positive screening determines that you have the trait, but it doesn’t distinguish between having the trait and having SCD. (The hemoglobin electrophoresis test costs $199 is designed to detect SCD and other blood abnormalities.) You can order and pay for either test online, but you must schedule an appointment and visit a Quest or LabCorp location for a blood draw. You must be at least 18 years old to order the test, which is not available in all states. You can access test results online.
Your healthcare provider can also order a sickle cell test.
It’s important to note that a positive screening means you need to take extra steps to confirm the result and get further evaluation. That additional healthcare typically means more costs.
Yes. If you or your child is newly diagnosed with SCD, there are evaluations to determine the type of SCD. A fetus can be screened for SCD to predict the expected severity of the condition. Newborns in all 50 states and the District of Columbia are screened for the sickle cell trait with a heel prick.
If you are planning on having biological children, you and your partner should consider finding out if either of you carries the sickle cell trait.
As mentioned, most newborns in the U.S. are screened for sickle cell and some fetuses are tested. It’s important to note that the sickle cell trait is far more common than SCD. Here are CDC racial and ethnic group estimates of the trait’s prevalence in newborns, which may offer insight into its prevalence in adults:
Black: 73 in 1,000 newborns
Hispanic: 7 in 1,000 newborns (data limited to 13 states)
White: 3 in 1,000 newborns
Asian or Pacific Islander: 2 in 1,000 newborns
A sickle cell screening may be covered for children and adults with commercial health insurance or an Affordable Care Act marketplace plan, if ordered by a healthcare provider. This test is typically covered for Medicaid enrollees.
You may be responsible for out-of-pocket costs such as a deductible, a copay, or coinsurance.
To find out what you’ll need to pay, contact your insurance plan to ask about coverage.
There are organizations that can help you access free sickle cell tests. They include:
American Red Cross: Blood donors who self-identify as African American can receive a free sickle cell trait screening.
Sickle Cell Disease Association of America (SCDAA): This nonprofit provides advocacy and resources for people with sickle cell and their caregivers. The organization also raises SCD awareness and offers free testing. If you need help paying for a sickle cell test, contact a SCDAA affiliate near you.
Health departments: Check with your state or local health department about free or low-cost sickle cell screenings. They also may be offered by family planning clinics in your area.
Without insurance, a sickle cell test can cost less than $100. With insurance, you may be responsible for out-of-pocket costs associated with a deductible, copay, or coinsurance. The sickle cell genetic trait is most common in those with sub-Saharan African ancestry, but it can affect other people as well. There is routine newborn screening for sickle cell in all 50 states and the District of Columbia. A baby can be born with sickle cell disease (SCD) if both parents carry the trait. That’s why it’s important for you and your partner to know if you have the sickle cell trait before having biological children. Free tests are available from advocacy organizations, health departments, and clinics. The American Red Cross offers free sickle cell trait screenings for self-identified African American donors.
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American Sickle Cell Anemia Association. (2021). Resources about sickle cell disease.
Centers for Disease Control and Prevention. (2019). Get screened to know your sickle cell status.
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Centers for Disease Control and Prevention. (2022). Data & statistics on sickle cell disease.
Centers for Disease Control and Prevention. (2022). What is sickle cell disease?
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Mount Sinai. (n.d.). Sickle cell test.
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