U.S. 'Flying Blind' When It Comes to Data on Substance Use in Pregnancy

This story was produced via a USC Annenberg Center for Health Journalism Data Fellowship.

Federal, state, and local public health agencies keep track of substance use disorders, hospitalizations, and deaths across the country. However, among the pregnant population, there is a lack of data describing the full picture, and the reasons for that are multifactorial.

Pregnant people in the U.S. face many barriers to addiction treatment, affecting how public health databases depict the crisis in this population. Patients who struggle with addiction may not seek care, keeping them out of public health surveillance systems. The disjointed nature of the substance use treatment system keeps public health officials from storing data from different providers and health systems all in one place. And it's difficult to see which patients receive treatment in public datasets.

Researchers and public health experts say that working with imperfect data is better than having none at all. But missing data on pregnant people with substance use disorders impedes the public health community's ability to understand what addiction really looks like in pregnancy, and can complicate how resources for treatment are allocated, they told MedPage Today.

"The fact that our data is limited sometimes makes people think that the problem doesn't exist," said Leah Habersham, MD, an addiction medicine specialist and ob/gyn at Mount Sinai in New York City. "Then, they're not as apt to help."

Flaws in Public Health Data

Several national datasets describe substance use disorders in pregnancy. The Substance Abuse and Mental Health Services Administration (SAMHSA) tracks outcomes surrounding substance use disorder in the general population and in pregnancy, including care received at specialty addiction treatment facilities, the number of prescribers of medications for opioid use disorder, and self-reported data from patients who use drugs.

In addition to federal data collection, state public health agencies, including New York, publish data on opioid-related hospitalizations and deaths, as well as rates of neonatal abstinence syndrome (NAS).

The available data have several flaws, including missing information from the pregnant population and lag time in reporting.

The federal government released a plan to improve access to treatment among pregnant and postpartum individuals last October. As a part of that plan, the Office of National Drug Control Policy (ONDCP) vowed to provide better data transparency by linking public health data across different agencies. The administration said it would link data from medical and child welfare systems, to further understand the relationship between drug use in pregnancy and the foster system.

The ONDCP also stated that it would create a public-facing database of providers who had an X waiver -- the special Drug Enforcement Administration (DEA) certification formerly needed to prescribe buprenorphine -- who also identified as obstetricians or midwives, to "serve as a call to action for healthcare professionals" to treat pregnant patients, a priority population.

But the federal government eliminated the X waiver at the end of last year, allowing any provider with a DEA license to prescribe controlled substances to administer buprenorphine, pending a one-time training.

Since the administration removed requirements to prescribe buprenorphine, there will be other ways to track specialists' prescribing, Rahul Gupta, MD, MPH, director of the ONDCP, told MedPage Today. States, for example, still have prescription drug monitoring programs, which gives local officials the ability to track how often individuals are prescribing medications like buprenorphine to their patients.

Gupta said that private companies like IQVIA, or national surveys, could provide more data on the number of buprenorphine prescriptions. But the government has not provided a specific plan about how it will track data about treatment of substance use disorder in pregnancy since the elimination of the X waiver.

Who's Getting Comprehensive Care Is 'Kind of Unknowable'

Experts also say there is a paucity of data showing how many pregnant patients with addiction -- or those in the general population -- receive treatment in the U.S.

"Actually looking at the portion of treated versus untreated opioid use disorder, in pregnancy, plus in general, is a pretty basic metric that in and of itself is a little bit difficult to get," said Mishka Terplan, MD, an ob/gyn and addiction medicine specialist based in Maryland.

"The fact that the public health distinction between treated and untreated disease is not made easily in the data, that to some extent can minimize the importance of treatment," Terplan said.

The public health system tracks specific outcomes related to substance use disorder in pregnancy, such as the number of infants who develop NAS, Terplan noted. But he added that infants can develop NAS if their mothers take prescription opioids for chronic conditions, take medications for opioid use disorder, or have untreated opioid use disorder.

"Those are three different populations," Terplan said. While NAS is a key metric to understand, it can obscure whether mothers actually have substance use disorder, and if they are being treated for it, when it is seen as a singular endpoint, Terplan said.

The standard of care for pregnant patients, comprehensive care, is not captured by federal databases, Terplan explained.

"A real limitation of SAMHSA, or other federal databases, is that it reflects a system of care in which addiction treatment is segregated from the rest of health services," Terplan said, noting that its doesn't depict the pregnant person who receives prenatal care and addiction treatment in the same time and place.

"We don't know how many people receive comprehensive services," Terplan said. "And that's really kind of unknowable."

Terplan said that further attention to data collection is needed to better understand the needs of pregnant people with addiction. "It's a core principle of public health, to have descriptive data of the population," he said.

Joyce Frieden contributed reporting to this story.