"When looking at substance use services, the disparities between white and non-white people receiving substance use treatment are painfully obvious," says Amita Wanar, a research assistant for Project RESPECT, a high-risk obstetrical and addiction recovery medical home that provides comprehensive services for pregnant women and their newborns through the Grayken Center for Addiction at Boston Medical Center. "Many substance use programs are reporting the same thing."
Recent data suggests dramatic increases in opioid use and overdose deaths among Black and Latinx people. And while rates of evidence-based substance-abuse treatment need improvement overall, experts say, evidence suggests treatment for these growing patient segments lags further behind. Research has shown that Black people were less likely than white people to receive treatment within 30 days of an opioid-related overdose, for example, and they were also less likely to receive buprenorphine to treat their opioid use disorder.
The Project RESPECT clinic is no exception. The team has become acutely aware that the overwhelming majority of Project RESPECT's over 1,500 patients are white women, yet people of color represent 70% of Boston Medical Center's patient population. Combined with findings from the National Survey on Drug Use and Health that Black women are more likely than white women to use illicit substances during pregnancy, the program's demographic numbers brought a somber realization that, as is the case at many clinics, utilization wasn't reflecting need.
"We needed to increase the number of women of color interfacing with prenatal substance use services," says Porsha Eden, MPH, former Project RESPECT program coordinator and current Healthy Start program coordinator at Community of Hope in Washington, DC. So the team at Project RESPECT recently launched the Pregnant Women of Color Initiative (PWOCI), an effort to improve care and outreach to women of color.
Why women of color are underrepresented in addiction treatment
To understand why women of color are often underrepresented in substance use programs and why they underutilize available treatments requires a look back at social history. Eden points to how Black people, especially Black women, were stigmatized during the crack cocaine epidemic.
History also legitimizes new moms' fear of imprisonment and losing child custody. For example, the War on Drugs (a national campaign launched in the 1970s by the U.S. federal government to combat illicit substances) led to massive and disproportionate incarceration of Black men and women that left a lasting impact on Black communities. A Black mother-to-be struggling with SUD may have good reason to fear losing her child if she seeks help. Studies have revealed that women of color struggling with SUD are more likely to be reported to Child Protective Services — and more likely to have their children taken away — than white women under similar circumstances.
"Those who feel safer to seek help are predominantly white," says Kelley Saia, MD, an obstetrician and gynecologist and the director of Project RESPECT. Healthcare experts were misled by the majority white demographic presenting to care, which created a façade of OUD as a white disease, she says. As the opioid epidemic peaked, Project RESPECT was struggling to meet the increased treatment demand of those presenting for care; unaware of the myopic perspective of disease prevalence this created.
Consequently, Black moms-to-be in Boston and across the country have had less access to counseling services, inpatient monitoring, substance withdrawal treatment, and maintenance therapies during and after pregnancy. And a lack of SUD treatment puts pregnant women at increased risk of adverse outcomes associated with substance use during pregnancy, including preterm birth, low birthweight, maternal mortality, and breathing and feeding problems for the baby.
Qualitative research gives a voice to women of color
To bring women of color into the conversation, Project RESPECT's Pregnant Women of Color Initiative is gathering qualitative data — hearing from the patients themselves to identify the crux of the issue. Eden and Wanar enlisted students from Boston University's School of Public Health to interview women of color who graduated from Project RESPECT to better comprehend their experiences and identify gaps in care.
A lack of SUD treatment puts pregnant women at increased risk of adverse outcomes associated with substance use during pregnancy, including preterm birth, low birthweight, and maternal mortality Click To Tweet
"A huge part of this is about evaluating and centralizing women of colors' voices throughout it all, and not assuming ‘this is what women of color need,'" says Eden. "When you value the voices of women of color, affirming what they want and feel, that will inform how you can improve services."
Although the research is still in its early stages, Saia and her team have already seen trends in participants' answers. Low feelings of self-worth and the stigma associated with SUDs are major reasons women don't seek care. Many women stated that the combination of their racial identity and their identity as someone who uses substances worked together to eat away at their feeling of self-worth and led them to believe they weren't worthy of getting help.
Community was another common thread among interviews, including the belief that one's own trusted circle of family was sufficient to tackle any problem, even an SUD.
"Especially for substance use, outside help may be useful, but must be delivered correctly," says Wanar. The family-based approach is a cultural preference among many minority groups, the team has found, and recognizing it may present an opportunity to create culturally competent approaches that also span evidence-based treatment for SUD.
Turning insights into action
As they continue to gather data and firsthand accounts from interviewees, the team at Project RESPECT is focusing on what it can do with existing research to create an ideal healthcare service. The first step is to enhance community outreach and begin marketing services to women of color in their own neighborhoods, in community-based settings such as churches, to help increase awareness of Project RESPECT's services.
The changes in their clinic and outreach are only a piece of the puzzle, however. To get at the crux of the issue — trust, largely — better representation is also critical. The substance use disorder field has a lot of work to do in terms of diversifying, says Eden, which means confronting institutional racism within the healthcare industry as well. The impact on patients is too important to ignore.
"A substance use disorder is a sensitive topic. It's hard enough for any human to disclose their issues with substance use... when you add layers of racism and race, it becomes very complex," Eden says. "Trying to open up and disclose personal information to someone who doesn't look like you — one can imagine how hard that would be."