A person battling a substance use disorder (SUD) is already facing a multitude of challenges, and whether they are personal, societal or systemic, the uphill road to recovery can often be long and arduous. For a pregnant woman, the stakes are even higher and the journey may seem daunting. Boston Medical Center’s Project RESPECT aims to change that notion.
“No one can make a pregnant woman struggling with substance use feel worse about themselves than she already does, so when they come to Project RESPECT, we say, ‘It’s okay. We’re going to help you through this,’” says Kelley Saia, MD, obstetrician and gynecologist and director of Project RESPECT.
A branch of BMC’s Grayken Center for Addiction and established in 2006, Project RESPECT is a high-risk obstetrical and addiction recovery medical home, providing comprehensive services covering obstetrics and addiction medicine for pregnant women and their newborns. According to the Centers for Disease Control and Prevention (CDC), opioid use during pregnancy has been linked to a variety of adverse outcomes including preterm birth, low birthweight, breathing and feeding problems for the baby and maternal mortality. Project RESPECT aims to minimize these consequences by supporting the mom-to-be through counseling services, inpatient monitoring, substance withdrawal treatment and maintenance therapies during and after pregnancy.
Since its inception, Project RESPECT has cared for more than 1,500 women, which has been particularly important in light of the opioid epidemic. Despite the volume of patients visiting the clinic, the team became acutely aware the majority were white women. This was surprising given people of color, mainly black and Latino patients, represent 70 percent of BMC’s patient population—Project RESPECT’s patient demographic is nearly 90 percent white and non-Hispanic.
“We looked at the outpatient clinic data at BMC, which serves a very diverse population of women, and realized Project RESPECT’s population didn’t mirror this reality. So after seeing and synthesizing this information, I thought, ‘We need to do something about this,’” says Porsha Eden, MPH, former Project RESPECT program coordinator and current Healthy Start program coordinator at Community of Hope in Washington, DC.
Eden and her colleague Amita Wanar, a research assistant for Project RESPECT, launched the Pregnant Women of Color Initiative (PWOCI) to assess the diversity discrepancy between BMC’s general population and RESPECT, and determine how to improve care and outreach to women of color.
“We need the Pregnant Women of Color Initiative to increase the number of women of color interfacing with prenatal substance use services.” explains Eden.
Crunching the Numbers
The CDC reports 400,000 people died of an overdose between 1999 and 2017. And although the National Institute on Drug Abuse reports white people, and white men in particular, are dying at a higher rate, recent data suggests there have been dramatic increases in opioid use and overdose deaths among black people —driving home that SUD does not impact any one group and the need for inclusive treatment programs and services.
Additionally, research has shown that black people were less likely to receive treatment within 30 days after an opioid-related overdose. They were also less likely to receive buprenorphine prescriptions—an opioid medication used to treat addiction. A recent study within BMC’s behavioral health clinics found only 10 percent of patients prescribed buprenorphine were black. The study also found that race and ethnicity were not predictors of treatment retention; however, national studies have reported otherwise, indicating the need for more research on this matter.
“When looking at substance use services, it is painfully obvious that there are disparities existing between people of color and white people receiving substance use treatment, not just women of color and pregnant women, but across all substance use clinics. A lot of substance use programs are reporting the same thing,” says Wanar.
A History of Trauma
The Project RESPECT team knows history plays an important role in grasping why pregnant women of color are often underrepresented in substance use programs and underutilizing available treatments. “When you look at the historical component of substance use disorder, particularly in regards to the trauma black people [endured] during the crack cocaine epidemic, and how black women were stigmatized, this drastically contrasts to how substance use disorder is now perceived and treated,” says Eden.
Fear of imprisonment and losing child custody are also legitimized by history. The War on Drugs—a national response and campaign launched in the 1970s by the US federal government to combat illicit substances—had a lasting impact on black communities and led to massive incarceration. A recent Substance Abuse and Mental Health Services Administration report summarizing the fallout of The War on Drugs states that as of 2017, a third of incarcerated adults are black, yet black people only represent 12 percent of the US adult population.
For a mother-to-be struggling with SUD, the fear of losing her child by seeking help is amplified when the mother-to-be is black. Studies have illustrated 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, as compared to white women.
“Now society utilizes a public health framework in relation to how substance use disorder is posited. Historically, this was not the case, as society treated black communities starkly different than how it now treats white communities [with SUD]. History cannot be overlooked,” says Eden.
The current opioid epidemic has been widely painted as an issue primarily affecting white people, but according to The National Survey on Drug Use and Health, this is not true, especially for black women who are more likely to use illicit substances during pregnancy than white women. Saia and her colleagues attribute this to a need for marketing as well as funding. “Those who feel safer to seek help are predominantly white,” explains Saia. “So we made the mistake, in health care, to only focus on reaching out to white people.”
Eden adds, “Substance use disorder is being framed as a white issue for abundant funding and resources. The media has been pivotal on how [substance use has] been portrayed, and people of color have been left out of that conversation.”
Qualitative Research is Key
An important part of the PWOCI’s research is gathering qualitative data—hearing from the patients themselves to identify the crux of the issue. “A big part of the initiative is the qualitative research component, especially the interview,” says Eden. Eden and Wanar enlisted a group of Boston University School of Public Health students to interview women of color who graduated from the Project RESPECT program. They asked them questions to better comprehend their experiences and see where there may be gaps in care.
“We need to figure out what worked for them in Project RESPECT, and what worked for them or didn’t at other clinics and treatment centers that they’ve gone to. We need to give them as much of a voice as possible,” explains Wanar.
“When you value the voices of women of color, affirming what they want and feel, that will inform you and how you can improve services. That’s a huge part of this—it’s about evaluating and centralizing women of colors’ voices throughout it all, and not assuming this is what women of color need. It’s coming from them and their input,” adds Eden.
Although the team is still in the collection stages of these interviews, they’ve already seen trends in participants’ answers. Self-worth and the stigma associated with SUDs are major factors in women potentially not seeking care. Wanar was surprised by how many women stated in their interviews that the combination of their racial identity and their identity as someone who used substances worked together to “eat away” at their self-worth.
“Generally speaking, women of color in our society are not set up in a way to have a strong feeling of self-worth, so when you couple that with having a substance use disorder, women said they felt like their self-worth couldn’t get any lower, and that they weren’t worthy of getting help.”
Community was another common thread among interviews, and that community and relying on one’s own trusted circle of family was enough to tackle any problem, even a SUD.
“We observed that black families really like to keep their [personal matters] within the family—the idea that ‘as a family, we can fix this and we don’t need to seek outside help for this.’ When really, especially for substance use, outside help may be useful, but must be delivered correctly,” says Wanar.
Eden recognizes this is a cultural preference among many minority groups, and sees it as an opportunity to create culturally-competent approaches to care and outreach:
“It’s important for anyone to have a sense of community, especially women of color, because they can rely on one another, report to one another and have that cultural understanding. So it’s important in terms of addressing their needs, to create communal support and have that reflect in the services they rely on.”
The Path Forward for PWOCI
There is comprehensive research surrounding the reasons why patients of color are underrepresented in health care specialties, and the Project RESPECT team acknowledges this as they continue to gather data and, most importantly, firsthand accounts from interviewees.
“We are not trying to re-spin something that’s already been discovered. So rather than completely focus on the barriers, we are spending most of our time focusing on what we can do with these pieces of information we have to create an ideal health care service,” explains Wanar.
The first step in taking action is to enhance community outreach and begin marketing services to women of color in their neighborhoods, says Wanar:
“We have been in touch with various community-based groups that aren’t necessarily medical, but serve women of color or people of color. We are working with places like churches where people of color actually spend time to promote Project RESPECT and let them know we’re here. It’s important to meet people in their community and look outside the medical field.”
In doing so, Saia, Wanar and Eden hope to change the image of Project RESPECT to one that is more inclusive and culturally-informed, and appreciate this call for self-reflection on behalf of their colleagues. “I think a big part of moving ahead, and one that will be inherently challenging, is asking white providers to reconcile with their own shortcomings and really question themselves on how they can do better—how we all can be better,” says Wanar.
But to truly build trust, Wanar and Eden know representation in medicine is critical.
“You have people of color coming in for services, and it’s important your providers and services reflect the population you’re serving. The substance use disorder field has a lot of work to do in terms of diversifying,” says Eden. “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. So trying to open up and disclose personal information to someone who doesn’t look like you, one can imagine how hard that would be.”
And although diversifying the medical workforce is a large undertaking that truly requires national buy-in and support, Wanar and Eden are not deterred. “The obvious reasons representation is low are the same reasons people of color are underrepresented across many specialties. Institutional racism exists in the health care industry. We know this. And I think we’re starting to see [change].”
