All facets of our daily lives are directed by policies of some sort: store return policies, school attendance policies, workplace safety policies, and governmental safety net policies. But when the people most affected by public health programs have no place at the table during policy development, discrimination and stigmatization often result.
A webinar hosted by the Association of Maternal & Child Health Programs explored opportunities to engage and co-design programs and policy solutions by allowing the voices of people with lived experience to contribute to the decision-making process, especially as it applies to perinatal substance abuse disorder.
Understanding intersectionality and how it affects policymaking
To engage impacted individuals in forming equitable trauma-informed policies, it’s crucial to understand the concept of intersectionality. Jenne’ Massie, DrPH, MS, senior research scientist and deputy director of the Intersectionality Research Institute at George Washington University, explained intersectionality as a framework of multiple intersections of an individual’s social demographics such as race, age, class, gender, immigration status, etc. The interconnected nature of these elements is key.
“Focusing on just one demographic characteristic ignores critical information about experiences at multiple intersections,” noted Massie. “You can’t separate ‘I am Black’ from ‘I am a woman.’ I am all of these things, and that’s how I am experiencing life.”
Power and privilege play out differently and shape different experiences within those demographics, affecting social justice and inequality. It’s essential to explore how the experiences of marginalized (“intersectionally invisible”) groups can be different and center those experiences, especially when developing programs and policies that affect them.
Her team of George Washington University researchers has developed an Intersectionality Policymaking Toolkit, funded by the WK Kellogg Foundation, to assist in drafting equitable maternal and child health programs. The Toolkit explains intersectionality and its history, including how it has grown out of Black feminism, and instructs its use in the maternal-child health policymaking process.
The five key intersectionality principles are:
- Intersectional positions: Intersectional positions are the different demographic characteristics that comprise each individual’s lived experience. Power and privilege affect how certain groups – or intersectional positions – may experience things.
- Centering: Centering involves listening to and valuing the lived experiences of the people most impacted by the issues, reflecting on how inequities developed and are maintained, and then developing policies based on that insight. Massie notes, “You can’t just focus on the norm groups. You are making certain to center the voices of these other groups that are often sometimes lost.”
- Multi-level analysis: A multi-level analysis includes viewing issues from more than one perspective and recognizing that inequality is rooted in societal structural systems that most often negatively impact marginalized groups.
- Intersectional invisibility: This involves ensuring no groups fall through the cracks or are left out. Massie gives this example: “When maternal and child health policies and programs are being developed, too often the focus is only on a cisgender birthing mother and no one else. These programs and policies affect way more than just a cisgender, white birthing mother … so every time we come up with something, whether it’s a policy, a program, we’re asking who is missing from this conversation, or who are we not shining light on that is affected by this policy or program that we need to center their voice?”
- Social justice and equity: Policies and procedures must be rooted in social justice and must be equitable.
Massie’s research team hopes to secure funding and establish a network of community partners to lead Toolkit implementation and distribution. Massie notes, “My biggest fear is that it just dies on our website as a PDF and doesn’t get out there so people can use it.”
Download the Intersectionality Policymaking Toolkit here.
A harm reduction approach to substance use disorder in birthing people
According to the Substance Abuse and Mental Health Services Administration (SAMHSA), harm reduction is “an evidence-based approach that is critical to engaging directly with people who use drugs to prevent overdose and infectious disease transmission … and is an important part of the Biden-Harris Administration’s comprehensive approach to addressing substance use disorders through prevention, treatment, and recovery.”
Dr. Ruchi Fitzgerald, assistant professor of Family Medicine and Psychiatry/Behavioral Sciences at Rush University and chief of the inpatient Addiction Medicine program at PCC Community Wellness Center, a federally qualified health center (FQHC) serving the west side of Chicago, spoke on the compassionate and nonstigmatizing harm reduction approach she employs with her pregnant patients struggling with substance abuse.
According to a 2022 JAMA report, “U.S. Trends in Drug Overdose Mortality Among Pregnant and Postpartum Persons, 2017-2020,” in Illinois in 2018-2020, the number one cause of maternal mortality was drug overdose attributed to fentanyl and the co-use of stimulants. Contributing factors include a changing drug supply with more potent fentanyl, fentanyl analogs, and stimulants with contaminants, as well as using substances alone due to shame and fear.
Fitzgerald attributes a harm reduction toolkit developed collaboratively by the Academy of Perinatal Harm Reduction and the National Harm Reduction Coalition as transformative to her practice. She notes, “For me, to read this toolkit, I was like, now I can help my patients who aren’t ready at this moment in time to start on medical treatment for their substance use … or discontinue their use altogether.”
A perinatal harm reduction program employs a multifaceted approach.
It helps prevent fatal overdoses by:
- Educating about the importance of never using alone. “Patients are often using alone; they’re using in a room by themselves, a bathroom perhaps, in a shelter, or an abandoned building by themselves because they don’t want to let anyone know that they’re using while they’re pregnant,” Fitzgerald states. “They feel the stigma and the shame and the discrimination and the hatred that society subjects upon them, so they’re using alone, and that increases their risk for having that overdose.”
A confidential, toll-free Overdose Prevention Lifeline is available 24 hours a day, seven days a week, 365 days a year. If someone is using drugs alone, they can Call Never Use Alone at 877-696-1996, and an operator will stay on the line with them to ensure that should the person go unconscious, emergency medical services will be deployed to their location.
- Instructing on naloxone, fentanyl test strips, xylazine, and co-using substances.
- Detailing routes of use, including discussing the benefits of moving from an intravenous to an intranasal route.
It helps prevent infection by:
- Discussing the importance of using clean supplies.
- Encouraging testing for infectious diseases (HIV and hepatitis).
- Educating about HIV prevention with the use of pre-exposure prophylaxis (PReP).
It helps patients navigate pregnancy by:
- Establishing prenatal care. “Even if you’re still using, we still want to see you for prenatal care,” Fitzgerald says.
- Discussing medication-assisted recovery and facilitating rapid access to a safe and nonjudgmental health care site with peer advocacy doula support. Fitzgerald notes that coaching patients on the process can improve success and retention.
- Educating on the effects of nicotine and alcohol in pregnancy.
- Discussing postpartum considerations while the patient is still pregnant, such as breast/chestfeeding and postpartum contraception.
It helps with social service needs by:
- Linking to community agencies that can address social determinants of health (SDoH), including help for intimate partner violence, whether the patient’s partner may need substance abuse treatment, housing support, food insecurity, etc.
- Employing a “Know your Rights Approach” by providing anticipatory guidance to patients on what to expect in the child welfare system and involvement in juvenile court due to hospital policy and legal reporting requirements of state statutes.
Fitzgerald acknowledges the ongoing challenges presented by laws on the books. Currently, 25 states and the District of Columbia consider substance abuse during pregnancy to be child abuse, and three states consider it grounds for civil commitment; 26 states and the District of Columbia require health care professionals to report suspected prenatal drug use; and eight states require health care professionals to test for prenatal drug exposure if they suspect substance abuse.
“Without deep examination of state statute, and reversing punitive policies, the laws that define substance use in pregnancy as abuse or neglect and involve the justice system,” Fitzgerald said, “I don’t anticipate we will see much impact on our maternal mortality rates because birthing parents will not feel comfortable accessing health care or substance abuse treatment, especially in the landscape of today’s drug supply.”
Recovery Coach Doula Program
Brittany Westmoreland, certified addiction tech & peer support specialist focusing on maternal substance abuse disorder, is a peer support doula at Sheridan Health, leading the Recovery Coach Doula program through the University of Colorado College of Nursing.
She shared statistics from the September 2023 Maternal Mortality in Colorado 2016-2020 report, noting that suicide, unintentional overdose, and obstetric complications were the top three causes of maternal death; 89% of the deaths were ruled preventable, with 100% of the overdose deaths identified as preventable. The overdose rate was the same as non-pregnant women of reproductive age (15-44). Mental health or substance use were contributing factors in one of two pregnancy-related deaths and one of five pregnancy-related deaths that were NOT due to suicide or unintentional overdose. Almost three-fourths (69.6%) of maternal deaths occurred between six weeks and one year postpartum.
Pregnant people experiencing addiction face barriers to getting the health care they need. The Recovery Coach Doula program, which Westmoreland has directed since its inception in January 2023, partners a pregnant person with substance use disorder with a Recovery Coach Doula, who is a peer support specialist with lived experience and professionally trained as a doula – a birth coach that provides emotional, physical, and mental support, assists patients in understanding medical jargon so they’re able to give informed consent, advocates for the patient, and encourages patients to advocate for themselves.
This support is available throughout pregnancy, labor/birth, and up to one year postpartum. “People can enter the program at any time; you can be five months postpartum and enter the program if you want to,” notes Westmoreland.
The Recovery Coach Doula helps patients identify needs and goals, supports interpersonal and community skills to help strengthen a patient’s recovery network, provides encouragement and education around pregnancy, parenting, and substance use, assists in community referrals if a patient needs public assistance, and provides guidance and support in navigating those systems.
The Recovery Coach Doula also collaborates with other hospital departments, including social work, to advocate for their patients. “When someone is on what we call here a red-flag list, which means they’ve been flagged to have Child Protective Services intervene before they’re able to leave the hospital, I would ideally speak to social work, as the doula, to really highlight the strengths of my patient and then give the patient a little update as to what to expect.”
Peer support specialists are an essential part of the substance use recovery process, “especially with overall care and retention because of the rapport that someone with lived experience is able to build with [patients], that providers and other people that are viewed as ‘within the system’ may not be able to build, at least as easily,” Westmoreland notes.
The Brave App: The Brave App connects people who would otherwise use drugs alone with remote supervision and overdose support while protecting their privacy, anonymity, and autonomy.
Never Use Alone Overdose Prevention Lifeline: Call 877-696-1996.
Narcan Training: www.getnaloxonenow.org/#gettraining
Where to Get Narcan:
- Rite Aid
SAMHSA’s National Helpline: 1-800-662-HELP (4357): Free, confidential, 24/7, 365-day-a-year treatment referral and information service (in English and Spanish) for individuals and families facing mental and/or substance use disorders.
Suicide and Crisis Lifeline: Call 988