This Foundation Is Highlighting the Link Between Opioids and Maternal and Infant Health Risks

The Foundation for Opioid Response Efforts (FORE) is the only national foundation that has a singular focus on finding and fostering solutions to the opioid crisis. But that doesn’t mean its focus is narrow, given the complex nature of this social and public health emergency. Case in point: FORE’s attention to the close link between opioid addiction and the maternal and infant health crisis.

On this front, the foundation has provided support for Don’t Quit the Quit, an organization based in North Dakota, that helps pregnant women and new mothers with opioid use disorder stay in recovery. Meanwhile, another grantee, Jenna’s Project, part of the UNC Horizons Program in North Carolina, provides housing and recovery resources for pregnant women with opioid use disorder after they leave prison.

“This is a high priority for the foundation, because there has been much more recognition and attention on maternal mortality and morbidity overall,” said FORE President Karen Scott. “We’re trying to do some of the work of bringing the issues together — issues related to substance use and overdose and not getting treatment — that are contributing to maternal mortality. In some states, it’s one of the leading contributors to maternal mortality rates overall.”

A 2022 JAMA study found that “among pregnant and postpartum persons, drug overdose mortality increased approximately 81% from 2017 to 2020.” And a special issue of Maternal and Child Health cited research showing that close to 1 in 4 pregnancy-related deaths is attributed to mental health conditions, including substance use disorder.

Although substance use prevention and treatment is an area that could use far more philanthropic support, a number of funders, like Bloomberg, Open Society Foundations and the Elevance Health Foundation, include it among their program areas (see IP’s brief, Giving for Substance Use Disorders and Addiction for more information). Elevance is also one of another group of funders, including Every Mother Counts and Lever for Change, that support efforts to improve maternal and infant health in the U.S. and around the globe.

FORE wants to highlight the link between these two issues by raising awareness of the role opioids play in maternal and infant health, and providing rare funding at the intersection of the problems. The foundation hopes others in the sector will work to break down some of the silos that may prevent maternal health funders from engaging with the opioid crisis.

Barriers to treatment

A number of interwoven factors contribute to health risks for women with substance use disorder who become pregnant. While evidence-based medications, like buprenorphine and methadone, are effective in helping people sustain recovery, pregnant women often stop taking them, either because they are afraid of risks to their baby or because they don’t have access to treatment.

Organizations including the American College of Obstetricians and Gynecologists and the Centers for Disease Control have established that buprenorphine and methadone are safe for use during pregnancy, but some women may nevertheless be fearful for their infant’s safety. Women may also have a hard time finding a provider who is willing to prescribe the medications, either because they lack training or feel uncomfortable managing opioid use disorder during pregnancy. In rural areas, in particular, it can be difficult to find providers trained in addiction medicine. A report by the White House Office of National Drug Control Policy concluded that pregnant women with substance use disorder are 17% less likely than non-pregnant women to be accepted for treatment appointments by outpatient buprenorphine providers.

Women may also avoid medical treatment because they are afraid that their child will be taken away from them if drugs, even medications prescribed for treatment of opioid use disorder, are found in their new baby’s system. These concerns are warranted, since hospitals in 48 states, Washington, D.C., and Puerto Rico are required to notify authorities if a newborn is shown to be “affected by” a substance — whether that substance is legal or not.

A recent New York Times report points out that states can implement the law their own way: “Many [states] responded by expanding child abuse reporting requirements to include the use of prescription medications during pregnancy. Even notifications, in certain states, resulted in investigations for abuse or neglect. In some places, a positive toxicology test was seen as evidence that a newborn was ‘affected by’ a substance.”

A 2023 study of pregnant women in Massachusetts found that their decision to take anti-addiction medications (or not) was largely influenced by fears that their child would be taken away by Child Protective Services. “This has led to many women either deciding to not start life-saving medication during pregnancy or to wean off of that life-saving medication during pregnancy and really risk poor outcomes for themselves and their babies,” Davida Schiff, one of the study authors, told NBC News.

According to Karen Scott of FORE, women who manage to stay in recovery during pregnancy and child birth face heightened risk of overdose in the months after their baby is born. It’s a period when mothers tend to be sleep deprived and overwhelmed with parenting responsibilities — just when support from family and friends may be less available than it was immediately after giving birth. The isolation and stress can increase the temptation to use, but taking drugs after a period of abstinence can lower tolerance and increase the possibility of overdose.

All of these risks and barriers to care are fortified by the widespread stigma against people with substance use disorder in general — and pregnant people in particular. Stigma can prevent women from seeking prenatal care or drug treatment before they give birth, and from seeking follow-up care after their baby is born.

“We hear a lot from women about the fear of how they are going to be treated in the healthcare setting,” Scott said. “If, for example, they’ve had a prior pregnancy, or a prior experience of going to the hospital and were treated badly because of their drug use — that kind of experience can drive people to put off prenatal care, or to put off going to the hospital unless it's absolutely necessary. That will contribute to the chances of a more negative birth outcome, and could also contribute to them losing their child.”

Access, support, education

Don’t Quit the Quit aims to minimize these barriers and — as its name indicates — encourage pregnant, postpartum and parenting people with substance use disorder to remain in treatment. Based at the University of North Dakota, the program focuses specifically on the state’s large rural population, where healthcare services are often hard to access.

Don’t Quit the Quit (DQTQ) has worked to increase the number of healthcare providers who are knowledgeable about and willing to provide medications for opioid use disorder to pregnant, postpartum and breastfeeding women. It has also trained community-based postpartum doulas to provide support and information on breastfeeding, healthcare and recovery for women during the difficult period after their baby is born. Education is a major component of DQTQ’s mission; it provides free webinars on subjects like building support during recovery, postpartum depression and stigma.

One of DQTQ’s most innovative projects is its collaboration with North Dakota’s WIC program. WIC serves eligible pregnant women, new mothers, infants and young children; it provides healthy food, information about nutrition and breastfeeding, and referrals to health and social services.

DQTQ initiated a training program for WIC staff, who have regular contact with a large population of pregnant and new mothers. The training provides staff members with language to discuss substance use, information on screening, and education and referral resources. The program was so successful in North Dakota that DQTQ was asked to provide training for WIC staff in other states, as well.

“Our WIC colleagues serve such an important role in the care of our perinatal people,” said Maridee Shogren, who heads Don’t Quit the Quit, and is dean at the University of North Dakota’s College of Nursing and Professional Disciplines. “WIC staff are required to ask clients about drug use, and our program is giving them the tools. We’re really proud to have moved the needle in terms of WIC education.” Shogren is currently waiting to hear about a grant that will enable DQTQ to provide trainings to all WIC agencies in the country.

Breaking down silos

Since it was created in 2018, FORE has distributed 102 grants totaling $40 million. It has invested $3.3 million over the last two to three years in programs that work with pregnant women and parents with substance use disorder.

Along with DQTQ, FORE also supports UNC Horizons’ Jenna’s Project, which provides pregnant women and mothers with opioid use disorder housing and treatment resources when they are released from jail. Several recent FORE grantees provide residential treatment that allows participants to bring their children.

“In some states, there are very few places where, if someone wants to go to treatment, they can take their child with them,” said Karen Scott. “That’s another barrier to treatment: ‘I want to get treatment and get well, but I'm going to have to be separated from my kids — to leave them with someone else or put them in foster care.’”

Scott hopes that other funders will consider supporting programs like these. “There has been some philanthropic attention to maternal mortality overall in this country, and if you consider the drivers of maternal mortality right now, unfortunately, overdose mortality is one of those significant drivers,” she said.

“We shouldn't be making things so siloed and so separate, but thinking holistically: If we want to improve maternal health and reduce mortality, we need to think about the needs of women with opioid use disorder as a piece of that. My message to my peers is, you don't necessarily have to have an opioid use disorder or a substance use disorder program, but if you're working on maternal health and maternal mortality, this is part of the the population you want to reach.”

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