Making Addiction Treatment More Equitable for Black People by Engaging People with Lived Experience of Substance Use Disorders

Harris Meyer*

Several years ago, Boston Medical Center and its Grayken Center for Addiction launched a data dashboard on patients with substance use disorders. The data showed that following an SUD-related emergency department visit, only 17 precent of people of color engaged in outpatient SUD treatment at BMC, compared with 43 precent of white patients who did so.

Miriam Komaromy, MD, who had recently become medical director of the Grayken Center, was troubled by this finding. “I’ve been aware for many years of huge disparities for Black patients who face more severe consequences for SUD, have less engagement with treatment, and experience worse outcomes,” she said. “I thought about how we should address this, and realized we don’t really know. How do we make treatment more appealing and equitable for Black patients?”

African Americans are slightly more likely to have substance use disorders than white people (17.2 precent versus 17.0 precent), according to the 2021 National Survey on Drug Use and Health. But overdose death rates are increasing faster for Black people than for white people.

Research Snapshot

  • Program: Embracing Anti-Racism in Addiction Treatment, Research and Policy: Engaging Black People with Lived Experience of SUDs. This is a research and policy change program conducted by the Grayken Center for Addiction at Boston Medical Center, the teaching hospital for Boston University.
  • Populations: Black people with SUDs in the Boston metro area, with the potential for impact on Black SUD patients nationally.
  • Goal: Gain a better understanding of how to improve treatment for Black people with SUD, then implement the findings at BMC and potentially other treatment facilities around the country.
  • Key Features/Results: Grayken Center staff recruited Black people living with SUD to participate in focus groups, then convened four day-long conferences bringing together addiction experts and the focus group participants. Based on those discussions, recommendations will be developed and improved operational policies at BMC will be implemented. BMC already has launched a Rapid Access program to help Black patients and other patients of color in the ED connect with SUD treatment.

Yet Black people are less likely than white people to receive treatment for SUD, less likely to be offered FDA-approved medication treatment, and less likely to receive residential treatment or outpatient counseling. When they do receive treatment, they are less likely to complete a course of treatment.

During physician office visits from 2004 to 2015, Black patients had a 23 precent lower rate of receiving a buprenorphine prescription for opioid use disorder, a 2019 research letter published in JAMA Psychiatry reported. Spurred by the data showing substantial disparities at BMC between rates of SUD engagement between people of color and white patients, Komaromy convened a group of about 25 clinicians and researchers, most of whom identify as Black, to think about ways to address this disparity. “We started this project saying someone probably knows the answer,” she said. “But most of the literature we found is old and in general does not contain the answers we’re looking for.”

They found some relevant research on treatment for other disease states. “But addiction is a strange condition that pulls in biomedical, psychological, social factors, trauma, and stigma, in a way that almost nothing else does,” she said. “It’s a whole different ballgame than dealing with kidney disease or high blood pressure.” So she and her colleagues launched a research project to find solutions, with a central focus on hearing the perspectives and experiences of Black people with lived experience of SUD.

Komaromy's co-principal investigator is Phillip Reason, the senior project engagement manager for the Boston Public Health Commission. Reason identifies as African American and in recovery for opioid and heroin addiction. He brings lots of personal observations of the recovery experience to the project. “In dealing with my addiction, I was looking for someone who looks like me,” said Reason. “Are they saying things I can connect with. You check to see if you are safe. I had to be incredibly vigilant. That was my chief complaint.”

“I thought about how we should address this, and realized we don’t really know. How do we make treatment more appealing and equitable for Black patients?”

Miriam Komaromy, MD, Medical Director, Boston Medical Center Grayken Center

Daneiris Heredia-Perez, Grayken’s senior research project manager, also has lived experience with SUD through working with her family members and friends to get addiction treatment “I’ve struggled to get family members connected with treatment post-detox,” she said. “I’ve also had friends impacted by having their parents struggling with SUD and watching them fall through the cracks. I always wondered why there was such a gap for children.”

Research Design and Implementation

After doing a literature review, in 2021 the Grayken team invited Black people with personal or family experience of SUD to participate in a series of focus groups. The first six groups included eight to 10 people who either had personal experience with SUD or who had family members with SUD. One additional focus group consisted of addiction treatment experts who attended via Zoom. Reason served as the lead facilitator. The Grayken Center received funding from the Patient Centered Outcomes Research Institute to conduct the research.

“We went into the community and it was us listening to the people affected, those who are closest to the pain, telling us their perspective,” Reason said.

The Grayken team then invited a half-dozen focus group participants who emerged as leaders to join a new Council of Experts in Patient Experience (CEPE). In late 2022 and early 2023, the CEPE members participated in four day-long conferences bringing together addiction experts from Boston and around the country, including researchers, physicians, nurses, social workers, and peer recovery coaches. Most were Black, which Reason said helped build trust among the CEPE members. CEPE members were paid a higher hourly rate for their participation than the other participants.

“They guided [patients] by asking more questions. It was a humanizing process that was really effective and made people want to come back.”

Calvin Smith, Member, Council of Experts in Patient Experience

“The listening piece was huge. Grayken never rushed anyone through their stories,” said Calvin Smith, a CEPE member who was separated from his parents and grew up in foster care because his parents were using drugs. “They guided them by asking more questions. It was a humanizing process that was really effective and made people want to come back,” added Smith, who recently earned a master’s degree in education and seeks a high school principal job.

Elizabeth Addison, another CEPE member, had a more mixed reaction to the experience. Addison, a recovery coach and musical playwright who is recovering from alcohol addiction, said some of her ideas received a skeptical reaction from addiction experts at the listening sessions, such as offering a richer array of individualized therapies. “That’s fine, we all have limited beliefs that need to be challenged,” she said. “But generally speaking, the fact that I was called back to be on this team suggested that I had something different that was worth offering.”

Each of the four conference sessions focused on a different theme under the general rubric of how to make addiction treatment more appealing and effective for a Black person who has an SUD. They included patient-level factors, provider-level factors, system-level factors, and the impact of trauma.

Themes From the Discussions

The focus group participants and CEPE members spoke a lot about feeling that addiction care staff often treated them with hostility and suspicion, and that kindness was in short supply, Heredia-Perez said. In residential treatment facilities, they felt disempowered, as if they were being incarcerated. They saw Black patients treated more harshly than white patients for rules violations.

“It felt like white folks were treated with more of a light touch and their grievances were more important than mine,” Addison said. “It was as though my story or experience did not matter, or that I was only my trauma, my addiction, as opposed to a full human being. I was dehumanized along the way, and that came from both white people and Black people.”

“It was as though my story or experience did not matter. Or that I was only my trauma, my addiction, as opposed to a full human being. I was dehumanized along the way, and that came from both white people and Black people.”

Elizabeth Addison, Member, Council of Experts in Patient Experience

The focus group participants and CEPE members also said co-occurring mental health conditions frequently went undiagnosed and untreated, according to Reason. When people did receive mental health treatment, it didn’t feel warm and comforting.

“Mental health is a huge theme,” Heredia-Perez said. “We heard people say they can get help with addiction but can’t get help with their mental health concerns, although they struggle with depression, anxiety, and trauma. Staff members need more training to screen for mental health issues.”

Another major theme was people’s well-founded fear of entering addiction treatment and having their children taken away and placed in foster care. “That really magnified the trauma,” Komaromy said.

Smith and his family experienced that trauma. Both he and his brother were placed in foster care because of their parents’ drug use. “I had to grow up really fast and figure out what I wanted and didn’t want, which all stems from being taken away from my parents and having zero contact with them,” he said. “That can create an ongoing cycle of drug abuse.” Indeed, his brother has struggled with substance use disorder for years, and is just now entering recovery in his mid-30s, Smith said.

Residential treatment centers should provide living spaces for the children of patients so they can maintain contact with their parents, Smith argued. “When a mother goes into rehab, she’s still worried about her kids,” he said. “That pushes people back into drug abuse to cope.”

Grayken staff also heard reports about inequitable access to treatment facilities due to racial discrimination and health insurance issues.

“We heard people say they can get help with addiction but can’t get help with their mental health concerns, although they struggle with depression, anxiety, and trauma. Staff members need more training to screen for mental health issues.”

Daneiris Heredia-Perez, Senior Research Project Manager, Boston Medical Center Grayken Center

“We’ve heard people say they would call a facility, and the staff would hear their voice or their name, and all of a sudden they wouldn’t have a bed,” Reason said. “Or they’d walk a person through the admission process, hear about the person’s health insurance, and then say they don’t have a bed.” Reason said policy reform is needed to ensure that all health insurance plans provide access to addiction treatment.

In addition, there was substantial discussion of the shortage of adequately funded and staffed addiction treatment facilities in Black communities, including a shortage of Black treatment staff. Smith said there are high-quality treatment opportunities available in the more affluent white communities of Boston that people in Black communities never hear about.

Komaromy said the Grayken researchers will develop recommendations on how to boost the number of African Americans working in addiction treatment, including individuals with lived experience of SUD. This may include educating high school students about addiction treatment as a career field, developing a curriculum for providers, and finding ways to make the field more financially attractive, such as paying student interns.

But a lot of the discussion came back to the hostility and lack of recognition of their full humanity that Black patients perceived during treatment. “The messaging is that you are…a garbage can,” said Addison, who has written musical plays about the recovery experience. “That’s the opposite of the messaging we should get, which is that we are loved regardless of how we appear.”

Plan for Improving Addiction Treatment at BMC

In 2021, Grayken and BMC launched a clinical program called Rapid Access. It helps Black patients and other patients of color who come to the emergency department with SUD-related issues connect with a recovery coach and counseling services. The program seeks to assign coaches and staff who are people of color to patients of color, as well as assigning staff who speak the patients’ native language if the patients are not native English speakers. Patients are linked to the program through physician referral or by calling a staffed triage line.

Grayken and BMC are now poring through the focus group and conference transcripts to develop model policies for residential treatment centers, Heredia-Perez said. The researchers also will interview past BMC patients, administrators, and staff, as well as administrators at other facilities where Black patients said they had a good experience, to develop recommendations for improvement.

In addition, the researchers will meet with BMC leaders and clinicians to refine policies over the coming year, then pilot-test the new policies, she said. After that, Grayken and BMC staff will study the test data to see what works and what doesn’t work. The Grayken Center received a grant from the Center for Anti-Racist Research at Boston University to conduct this further research.

The ultimate goal is to disseminate model operational policies to improve addiction treatment of Black patients nationally. Grayken hopes to establish a corps of consultants locally and nationally who are available to help researchers and addiction program administrators and clinicians around the country.” The next phase is digging deeper into what it would look like in a rehab program to create an environment where Black patients feel empowered,” Komaromy said.


Thanks to Dr. Miriam Komaromy, Phillip Reason, Daneiris Heredia-Perez, Elizabeth Addison, and Calvin Smith for helping to inform this article.

*Author Harris Meyer is a freelance journalist who has been writing about health care policy and delivery since 1986.