by Amanda DiMeo
A few years ago, I spent most days during a chilly New England fall at a syringe exchange, working as a researcher studying harm reduction programs in Massachusetts. Each syringe exchange program had a cozy back office, which is where I’d spent most of my time in conversation with people who use drugs. My job was to interview them about their experiences with drug use and harm reduction services. We’d usually start with a cup of coffee and small talk about the ways people were keeping warm. Then, I would close the door and turn on the fan outside the door to ensure no one could hear us.
I talked with nursery school teachers, people whose children were taken into custody by the Department of Children and Family, and people who had undergone grueling custody battles. We talked about childhood and parenting experiences. Toward the end of my list I was required to ask, “Are you currently pregnant?” More often than not, I’d feel warm in these moments as the answer was “yes.” Quite a few times, I was the first person to know. I’d say, “Congratulations,” and share the joy in those moments.
Our conversations were set in the context of a devastating opioid crisis in the U.S., with drug overdoses as the leading cause of accidental death. Rates of overdose deaths among women have been increasing, and rates of infants born with neonatal abstinence syndrome (NAS) are four times higher now than they were in the 1990s. Pregnant women who use drugs are also at increased risk for maternal complications.
This crisis is complicated by mass incarceration for drug use and possession that disproportionately impacts the Black community. Research shows that current, punitive policies that incarcerate people who use drugs can discourage women from accessing prenatal care and cause them to miss appointments. Maternal mortality reviews across the U.S. have continued to find substance use to be a major risk factor in maternal death, with Black, American Indian, and Alaska Native women in the U.S. two to three times more likely to die from pregnancy-related causes than their white counterparts. Stigma against people who use drugs is pervasive in American society—and even more so when combined with pregnancy.
According to the Guttmacher Institute, we currently have more states (23 state and the District of Columbia) that consider substance use during pregnancy to be child abuse than states that have created or funded drug treatment programs that target pregnant women (17 states). Additionally, only 10 of our 50 states prohibit publicly funded drug treatment programs from discrimination against pregnant women. Amnesty International recognizes the impact of pregnancy criminalization laws, specifically calling out the “chemical endangerment” law in Alabama, which has charged some woman under the suspicion of using drugs, and the “fetal assault” law in Tennessee, which between 2014 and 2016, made it a crime to give birth to a child who shows symptoms of drug exposure.
In my professional experience caring for birthing people who use drugs, I’ve heard perspectives that focus on provision of birth control and abortion services as means to address the rising rates of NAS. Some programs in the U.S. have been criticized for offering cash incentives for long-term contraception, targeting communities of color, and at times partnering closely with police. Data from the National Survey of Family Growth suggests that low-income women and women of color are more likely than their privileged counterparts to use long-lasting contraception, a notable disparity considering that methods could be delivered coercively—as through financial incentive. While increasing access to care is essential in the improvement of our healthcare system and health outcomes, we should go further to ensure we are promoting dignity and choice for all birthing people. Birthing people who use drugs have a human right to health, and with that, the right to experience a healthy pregnancy. We, the medical and public health community, have a duty to support them.
With a harmful legal environment and a lack of support of publicly funded drug treatment programs that specifically target birthing people, there is an urgent need to provide support and improve care for birthing people who use drugs. Programs to expand comprehensive treatment services and improve access to care are making a positive impact on maternal and newborn health for birthing people who use drugs. Project RESPECT at Boston Medical Center is a high-risk obstetrical and addiction recovery medical home, which provides obstetric and substance use disorder treatment for pregnant women and their newborns across Massachusetts. The existence of harm reduction services in the community can also serve as a connector to services and a valuable touchpoint for people to obtain care.
After I talked with my interviewees about their pregnancies or experiences growing up, we then talked about treatments they’ve tried and how they’ve accessed care. Most had existing connections with the people at the exchange, and I witnessed trusting provider-patient relationships. I saw the same clients come in over time, looking to meet with a specific nurse or provider. Providers gave clients safe injecting supplies, treated abscesses, and called around to find clients beds at facilities that offer detoxification services. People who use drugs, especially pregnant people, talked about their options and what they could do next together with their provider.
Addiction is a chronic disease—not a label for incarceration. We have a long way to go in supporting people who are pregnant and use drugs. We need to encourage and foster more trustworthy patient-provider relationships that provide open space without judgment. We need to fund and support treatment programs that give birthing people who use drugs options and agency to make decisions for themselves.
Amanda DiMeo is a Research Manager on the Delivery Decisions Initiative (DDI) program team. Amanda is a harm reductionist who advocates for people who use drugs, and volunteers as a rape crisis counselor for the city of Boston. Prior to joining Ariadne Lab, Amanda worked at Boston Medical Center, where she managed and conducted research about harm reduction and HIV risk behavior for people who use drugs in Lowell and Lawrence, MA. Amanda received her MSc in Public Health from the London School of Hygiene and Tropical Medicine and a BSc in Health Science from Boston University. In her free time, Amanda enjoys cooking and baking, and has recently enjoyed learning how to make pasta.