Sickle Cell Disease: Myths and Misconceptions

Sickle cell disease (SCD) is a genetic disorder that affects red blood cells. A major challenge in treating people with SCD is a lack of information.

Myths about sickle cell disease

Many adolescents transitioning to adult care do not have the knowledge to manage their own healthcare and discuss their condition. Adult doctors may also be unfamiliar with treating SCD-related health complications. Knowing the myths and misconceptions can help everyone understand how to manage complications.

Myth #1: Only Black people suffer from SCD

SCD does not discriminate based on ethnicity or skin color. Anyone of any ethnicity can have SCD. Whether children are born with SCD depends only on their parents’ SCD status, not their ethnicity. In fact, SCD is also found in people of Indian, Middle Eastern, Hispanic, and Mediterranean ethnicities.¹

SCD occurs more often in people whose ancestors lived in a region affected by malaria. Most cases occur in Nigeria, the Democratic Republic of the Congo, and India. The abnormal hemoglobin gene is more common there because sickle cell trait (HbAS) offers protection against severe malaria.^2,3

Population shifts have scattered SCD around the world. In the United States, most people with SCD are Black, but the condition is also found in Hispanic Americans.⁴

Myth #2: It is a contagious blood-borne disease

SCD is a genetic condition present at birth. People only have SCD if they inherit an abnormal hemoglobin gene from each parent. Therefore, children can only have SCD if both parents have an abnormal hemoglobin gene. It is not possible to get infected by the blood of someone who has SCD. SCD is not contagious, and you cannot “catch” SCD.^1,5

Myth #3: People with the disease are immune to malaria

Doctors sometimes tell people with SCD that they are immune to malaria and that they do not need anti-malarial drugs. This is not true and can be harmful to people in areas affected by malaria. In fact, malaria may contribute to higher mortality rates among people with SCD in Africa.⁶

Many people believe this myth because SCD is an evolutionary response to malaria. This means that the sickle hemoglobin gene has naturally become common in areas affected by malaria. People who have sickle cell trait (HbAS) are less likely to have severe forms of malaria. These are people who inherited an abnormal hemoglobin gene from 1 parent and a normal hemoglobin gene from the other parent. They are more likely to survive to reproductive age and pass on the abnormal hemoglobin gene to their kids.¹

People with SCD who inherit 2 abnormal hemoglobin genes (1 from each parent) do not have any protection against malaria.¹

Myth #4: People exaggerate SCD pain for access to drugs

There is no evidence of increased drug abuse in people with SCD. The most common symptom of SCD is severe pain. This pain often does not respond to over-the-counter pain medicines, so people with SCD may need opioids to provide relief.⁵

Over time, the body develops a tolerance to opioids. This leads to people with SCD needing higher doses to manage SCD pain. This has led to the perception of people with SCD as “drug seekers.”¹

This misconception mainly occurs because of racism and stigma in our society. Most individuals affected by SCD in the United States are Black, and structural racism impacts the disease in many ways. For example, SCD research is 8 times less likely to be funded than research on cystic fibrosis, which is a rarer disease that affects mostly white individuals.⁷

Racism and stigma also contribute to treatment in the ER. People with SCD wait for 25 percent longer for treatment than the general population, despite having higher levels of pain. However, they wait just as long as the general Black population. This is consistent with other research that has shown that Blacks and other racial minorities experience longer delays or lower pain management than white people.^8,9

Black individuals wait longer for pain treatment in the ER because of unequal access to care. They may be more likely to seek care at hospitals that are overcrowded or have lower resources. Without objective measures of pain, uncertainty can allow unconscious biases about Black individuals to influence quality of care.⁹

Myth #5: Sickle cell trait is a mild or early form of sickle cell disease

Sickle cell trait is different from SCD. A person with sickle cell trait inherits only 1 abnormal hemoglobin gene, while a person with SCD inherits 2 abnormal hemoglobin genes. Usually, people with sickle cell trait do not experience any symptoms of SCD.

However, testing for sickle cell trait is important. If 2 people with sickle cell trait have a child, there is a 25 percent chance that the child will have SCD.

Myth #6: Babies born with SCD do not survive to adulthood

Until the 1990s, many children born with SCD did not live to adulthood. Now, however, more than 90 percent of children born with SCD in the United States survive to adulthood. Every newborn in the United States is screened for SCD. Early diagnosis helps doctors prevent infections and stroke, which previously caused high mortality rates in children with SCD.³

The life expectancy of people with SCD in the United States is still shorter than for the average American. There is work to do to improve treatments and access to care for adults with SCD.

Myth #7: There is no cure for SCD

The only cure for SCD is a bone marrow transplant. However, it is very rare for people with SCD to have this procedure. It is only done for individuals with severe SCD with a family member who is a matched donor.¹⁰