Last year, at least 2,310 people died from opioid-related overdoses in Massachusetts, according to state health department figures — and the overdose death rate among non-Hispanic Black residents showed the largest increase over the previous year of any demographic group, at a staggering 42% increase.
Yet, Black people in general are less likely to receive counseling, medication, or other treatment for substance use and less likely to complete treatment when it is offered. And in part due to the long legacy of the War on Drugs and its punitive impact on Black individuals, families, and communities, the face of the opioid overdose crisis as a public health concern has been overwhelmingly white.
At Boston Medical Center, the Grayken Center for Addiction offers a large and growing array of services for people with substance use disorder (SUD). Still, Black patients who come to BMC’s Emergency Department for SUD-related issues are less likely than white patients to engage in follow-up treatment or addiction programs. Grayken Center Medical Director Miriam Komaromy, MD convened an interdisciplinary team to investigate why Black patients were not engaging with treatment and to explore how treatment programs could be changed to better meet Black patients’ needs.
A project to develop anti-racist addiction treatment approaches
In the resulting project, called “Embracing Anti-Racism in Addiction Treatment, Research and Policy: Engaging Black People with Lived Experience of SUDs,” Komaromy and co-investigator Phillip Reason, MSW, MPH brought together experts in addiction care and research along with a newly-formed Council of Experts in Patient Experience (CEPE) made up of Black community members who could share expertise from lived experience with SUD.
The overarching goal of the project, supported in part by the Patient-Centered Outcomes Research Institute, was to find ways to make addiction treatment more appealing, equitable, and effective for Black people. Specifically, the team wanted to learn how they could increase the likelihood a Black person would seek treatment; create a more welcoming addiction treatment environment; and change treatment so that it works better for Black patients.
In 2021, they conducted focus groups with Black Bostonians who had experienced SUD themselves or through the experiences of family members. The facilitators, most Black themselves, asked the groups about their perceptions of barriers to SUD treatment and their visions for what ideal treatment would look like for Black people. From there, some focus group participants came together to form the CEPE. After receiving training in research methods, CEPE members participated as co-equals with other local and national experts — a racially diverse set of social workers, peer coaches, nurses, physicians and researchers — in a series of four convenings in late 2022 and early 2023.
Each of these day-long “conferences of addiction experts” investigated a different factor in Black people’s experiences and perceptions of treatment: patient-level factors; provider-level factors; wider system-level factors; and the impact of trauma.
Honoring lived experience of addiction and racism
Craig McClay, a BMC community engagement facilitation specialist, was the lead facilitator at the conferences. He found the sessions powerful, particularly for their thorough inclusion of people with lived SUD experience.
“Seeing the value of people who have lived experience, and lifting that voice up and centering it” will be crucial to improving treatment, he says. “There’s a lot of skills and knowledge and value that people who we push to the margin can add to what we’re doing here. We need to hear that voice, that perspective, if we want to ever get close to what we call the truth.”
Sheila E. Chapman, MD, a BMC primary care doctor whose role includes being a patient experience coach — and an integral part of this project as a clinician and researcher — concurs.
“One of the most authentic pieces of being involved with this project is the equity among the diverse members of the project team,” says Chapman, who facilitated conference breakout sessions. “So it’s not just that folks with lived experience or community-advocate types are engaging. It’s more than that. They’re truly partners. We are all equal partners.”
McClay and Chapman recently presented some of the results at a community conversation at the Grove Hall branch of the Boston Public Library in Dorchester, which also included community activists in attendance.
“There’s a lot of skills and knowledge and value that people who we push to the margin can add to what we’re doing here. We need to hear that voice, that perspective, if we want to ever get close to what we call the truth.”
“To hear the other folks say what they said, it was empowering, for me as an individual and for the community. It appeared to me that the findings were right in line with their experience,” McClay says.
“What came out for me was this eagerness from the audience to just share their honest raw impressions,” Chapman says. “I felt like they really trusted us enough to speak whatever was on their mind.”
Recommendations for changes in addiction treatment and beyond
The project so far has yielded a rich set of recommendations that fall under two broad categories: ideas for changes in addiction treatment and treatment organizations, and changes in the larger systems that affect addiction and treatment. These recommendations have now been compiled in a report that covers the project’s origin, method, and results.
For treatment organizations, such as clinics and residential and outpatient programs, recommendations include:
- Hold staff accountable for experiences of Black patients.
- Change hiring, training and staff support practices, including hiring more people of color, prioritizing front-line staff who have lived-experience of SUD, and educating staff to help them become anti-racist and to work effectively with Black patients and clients.
- Empower and support patients in treatment groups, for example, creating self-governance systems among participants and making specific efforts to foster a sense of belonging for Black people.
- Make addiction treatment approaches less punitive and more strength-based. Examples here include inviting Black patients to evaluate and offer feedback on their care, incorporating elements of religion/spirituality and arts, and providing greater family support.
- Address trauma, including racial trauma, by implementing trauma-informed approaches throughout treatment.
Recommendations for broader systems changes include:
- Recognize that fear of separation from their children is a factor in Black parents not seeking treatment, and reform the child welfare system to focus on keeping families intact or reunifying.
- Increase education and career guidance for young people to ward off the hopelessness that can be a factor in substance use.
- Add support in hospitals, such as recovery coaching, to increase rates of treatment engagement.
- Reduce the use of incarceration and excessive police response in substance use cases.
- Provide recovery pathways that include employment.
- Incorporate SUD prevention and treatment for military personnel and veterans.
Key unanswered questions about the future of anti-racist addiction treatment
Clearly, the project is not an end in itself, but a launchpad for improvements and further research. The report concludes with a long list of questions extracted from the conferences, still to be answered. Among them:
- If addiction treatment were developed specifically for Black people, what would it look like?
- Does treatment of racial trauma help to improve health and functioning?
- What practical measures can help Black patients feel more empowered in treatment relationships and be able to shape their treatment?
- What are viable methods for child protection that are truly supportive of families staying intact?
Looking ahead at the future of SUD treatment
While grateful for how much they’ve learned so far and the opportunity to present that to the community, Chapman and McClay are also looking ahead, with an eye on ensuring ongoing engagement.
“One of the things that’s so important about the way this project is designed is to give that active feedback to participants about what we are doing with the research, where we are, where we hope to go — and that we are keeping them in the loop,” Chapman says. “I think that is a novel approach, and very necessary.”
McClay sums it up this way: “I’m looking for a complete sea change in how we approach medicine, justice, equity — and being authentic about it, not just performative. We’re playing a long game here, folks. It’s a journey. We’re not all of a sudden going to have a silver bullet that’s going to solve everything; we’re going to chip away at the various solutions and various paths, and then explore. But it’s a long game.”
