SCD poses obstacles to fatherhood for Black men, analysis shows
Findings urge interventions to help men with SCD achieve family-building goals

New research shows that Black men with sickle cell disease (SCD) become biological parents at a lower rate than similarly aged Black men in the U.S. general population.
The analysis found about 25% fewer Black men enrolled in the Sickle Cell Disease Implementation Consortium (SCDIC) registry were parents compared with a matched group of Black men in the National Survey of Family Growth (NSFG).
According to researchers, fertility problems, the disease’s financial burden, and fear of passing SCD to children may contribute to the lower parenthood rate among men with SCD.
“Despite improvements in survival, our findings suggest that having SCD may still hinder achievement of life goals, such as parenthood,” the researchers wrote.
The results were reported in a letter titled, “Biological Parenthood Rates Among Men with Sickle Cell Disease,” published in Blood Advances.
Understanding the cause of sickle cell disease
In SCD, red blood cells containing a faulty version of hemoglobin — the oxygen-carrying protein inside red blood cells — tend to become stiff and stick to other cells and blood vessel walls, potentially blocking small blood vessels. These cells also tend to die early, which can lead to anemia, where fewer red blood cells are available to carry oxygen. It predominantly affects people who are Black or of African descent.
Advances in treatment have significantly increased the life expectancy of people with SCD, with most surviving into adulthood.
“Thus, it has become increasingly important to assess if this progress has also resulted in these individuals achieving life goals commonly reported among adults, such as family-building,” the researchers wrote.
To learn more about parenthood rates among men with SCD, researchers analyzed data from the SCDIC registry and the NSFG. SCDIC is a research program to identify and address barriers to care for people with SCD.
Males 15 to 45 years old who completed the SCDIC survey’s question “Have you ever fathered a baby?” were included in the analyses. Answers to that question were used to determine the rates of biological parenthood.
A total of 1,024 men with SCD (mean age 27.6) and mostly Black/African American (92.4%) enrolled in SCDIC between 2017 and 2019. Almost a third (30.6%) had at least one child.
Researchers also analyzed data from 1,026 Black men enrolled in the NSFG study, within the same age range and time, to more closely match the population included in the SCDIC registry.
When comparing the groups, the researchers found about 25% fewer Black men with SCD were biological parents compared with similarly aged Black men in the U.S. general population.
Besides problems with fertility, which was reported in about 17% of men in data from the SCDIC registry, other factors may contribute to a lower parenthood rate in SCD, according to researchers.
These may include the financial burden associated with managing SCD — 45% of the men were not working at the time of the survey — fear of passing the disease to their children, and difficulties with romantic relationships associated with health issues and social isolation.
“Future studies are needed to elucidate the factors that influence this so that targeted interventions and guidelines can be developed to ensure that these men also achieve their reproductive and family-building goals,” the researchers wrote.