Many expectant mothers in California continue to face two simultaneous challenges: potential exposure to a virus that has already killed over 70,000 Californians, and inadequate access to the best maternal health care options. Recently the California Department of Public Health (CDPH) announced changes to its Prenatal Screening (PNS) program, touting “high-quality prenatal screening for every pregnant individual in California.” While well-intentioned, the flawed design of the program will only serve to reinforce painful healthcare disparities that will once again, disproportionately impact Black and brown families in California.
The Genetic Disease Screening Program (GDSP), which is managed by CDPH, announced its intention to offer cfDNA (cell-free DNA) testing to all pregnant women in California beginning in July 2022. cfDNA is a more accurate method for screening for genetic chromosomal abnormalities in babies during pregnancy, and it has become the standard method of prenatal screening in the country. Unfortunately, the updated PNS program restricts physicians to ordering screening for only trisomies 21 (Down syndrome), 18 (Edwards syndrome), and 13 (Patau syndrome), and does not include other important conditions that doctors commonly screen for and labs include in cfDNA tests.
California physicians routinely order cfDNA testing for their patients that include screening for conditions beyond trisomies 21, 18, and 13, including sex chromosome abnormalities (e.g., monosomy X) and microdeletion syndromes. As an example, 22q11.2 deletion syndrome (DS), the most common microdeletion syndrome, for which early detection and interventions can profoundly impact a child’s outcome, is typically included with most cfDNA tests ordered in California and nationally but will not be an option in the updated state program. By not even offering the option for physicians to order testing for several critical and commonly screened for conditions, CDPH is taking a step backward from what is available to physicians and patients today, and California mothers are left with a lower standard of prenatal screening care than what is available elsewhere in the country.
The PNS program’s history foreshadows how this is likely to play out: mandating a sub-standard level of care will lead to concerning health disparities. Data shared by CDPH from 2018 showed that Whites or Asians participating in the PNS Program were more likely to have had cfDNA screening outside the PNS Program than Hispanic or Black PNS Program participants; the uptake rates were 39% (White or Asian), versus 17% (Hispanic or Black) in 2018. So White and Asian program participants were much more likely to seek out and obtain additional, high-quality screening outside of the program, likely due to a combination of financial (insurance coverage or ability to pay out of pocket) or access factors (their doctors had the resources and staffing to offer additional screening options beyond what was offered in the state program).
With the modified program, we could expect to see similar behavior play out. White or Asian patients will be more likely to have the means and opportunity to access screening for the additional conditions not offered in the state program. Meanwhile, those in predominantly Black or Hispanic underserved communities will be relegated to the more basic screening offered by CDPH and will have more babies born with these conditions without access to the critical information that may have led to earlier intervention to improve outcomes. By imposing a single test offering with no flexibility to add additional conditions within the program, and no ability to opt out of the program, CDPH will likely end up further exacerbating healthcare disparities, where the have’s and have not’s experience two very different standards of care.
California can become the leader when it comes to equitable access to top-notch maternal and prenatal care options. While the vision of offering cfDNA screening to all pregnant mothers is compelling, California’s policymakers must slow down to make sure that this program doesn’t ultimately do more harm than good, particularly for our state’s Black and brown mothers. I implore CDPH to delay this program until it can ensure that it is truly designed to improve access to the highest quality healthcare for all California mothers.
Felica Jones is the CEO of Healthy African American Families II (HAAF).