In early March 2020, before the world began opening its eyes to institutional racism in a way not seen since perhaps the 1960s, a pebble was tossed into the sea of racial disparity in the diabetes advocacy world.
That pebble looked like this:
Kacey Amber Creel, a white young adult with type 1 diabetes (T1D) was manning the information table for the College Diabetes Network (CDN) at a local diabetes event in Austin, Texas.
Quisha Umemba, a Black woman who’d been helping run the booth and who lives with prediabetes, had just come back to her assigned table spot after perusing the exhibit hall and educational sessions.
Almost under her breath, Umemba muttered what was bothering her — not so much directly to Creel, but just as a general statement.
“There’s not a single person here who looks like me,” she said to herself quietly. “No speakers, no attendees; no one else looks anything like me here.”
Umemba didn’t realize it, but she said that aloud and it was overheard by Creel, who not only understood but immediately decided to take action. The verbal pebble thrown was about to spread ripples, ones that would enlarge and become the beginning of an official movement to bring equality to the diabetes patient landscape.
The pair went on to create a People with Color Living with Diabetes (POCLWD) summit and a new nonprofit organization called Diversity in Diabetes (DiD), established in August 2020.
Together, the passion of these two women converged into a joint effort to bring more inclusion and diversity to the Diabetes Community and allow for more voices to be a part of discussions, advocacy, and change.
Umemba is no stranger to diabetes in a minority household. Her father has type 2 diabetes and she’s living with prediabetes herself. With a background as a registered nurse with a master’s in public health, she works as a Diabetes Care and Education Specialist (DCES) and lifestyle coach, as well as a community health worker instructor.
Yet, the impact of race on diabetes care even shows in her own home.
“I didn’t realize it was as bad as it is until I was asked, ‘Daddy, want to know what an A1C is?’ He’d been diagnosed for 3 years. His daughter is a [DCES]. And he didn’t know what an A1C is,” she said. “I was taken aback. I realized that taking a class or two [about diabetes] is not enough. To do well with diabetes, you have to be a student of diabetes for the long haul.”
That, she said, is rough from two points of view: Minorities with diabetes have less access to programs, classes, and even coverage for basic care. They also live in a culture where diabetes isn’t discussed very often — where those with diabetes hide that truth from their peers.
The combination can be lethal and needs to be changed. But, Umemba points out, when you guide a Person of Color to most big educational events, you throw them into that same setting that took her aback: a sea of white people, with few, if any, faces like hers.
That’s where Creel comes into the story.
Creel grew up in a small Texas town without much diversity. But when she chose to attend Texas Southern University — a Historically Black College and University (HBCU) — and landed a roommate who coincidentally had T1D and was also a minority, Creel says her eyes were brought “wide open.”
“She had such a different outlook on diabetes than I did,” Creel remembers. “For me, it was all about ‘this will not define me!’ and ‘I can do it all with this!’ For her, she was still grieving, years into it. And she didn’t have the tools I had — a pump, CGM [continuous glucose monitor], all those things. It was like we were living two entirely different diabetes lives.”
When Creel joined CDN there, the chapter vice president was a minority with T1D as well, with a similar past and outlook as her roommate. It struck her hard. She realized, she said, that race impacts not just how you see yourself in the diabetes landscape, but how the diabetes landscape treats you. It shocked her.
“You never want to accept something that can be that wrong as true,” she says.
So, when Umemba made her declaration, Creel was the right person to hear it. “Why wait for some big group to change this? We can do this ourselves,’” she told Umemba.
Today, the women are a two-person team intent on taking on — and solving — the patient diversity problem in the diabetes landscape.
The two held their first event in August, called the POCLWD Summit, attracting over 600 people from all races to lay the groundwork for open discussions and eventual action to change how People of Color are treated, viewed, and represented in the diabetes landscape.
Creating the first POCLWD event meant being cognitive of those nuances and creating a space where all feel welcome, comfortable — and yes, where others look not just like them, but also unlike one another overall. True diversity.
While they’d first planned to hold an in-person event in the Austin area, the COVID-19 pandemic forced them online. But this turned out to be providential in some ways because the need, they clearly saw from the flurry of signups from around the country, is not limited to Texas.
“People were inboxing and DM’ing me as it was going on, saying ‘Oh my God I’ve felt alone all my life until now,’” Umemba said.
That initial 2020 virtual event was so successful that they hosted a second one in 2021.
Held over 3 days in September 2021, they featured pre-recorded, live, and semi-live segments with community members and subject-matter experts. The theme of the event was “Voices of the People,” with 683 individuals registered from 32 different countries, a total of 53 speakers, 33 sessions, and 11 vendors or sponsors.
Creel told DiabetesMine that the goal for that second POCLWD Summit was “to showcase the stories and experiences of Blacks, Indigenous, and Persons of Color living with diabetes around the world. We specifically worked to highlight underserved and marginalized populations.”
They plan to continue the summit for 2022 and beyond.
The two have also launched DiD, a nonprofit that they hope will tackle the many issues facing minorities with diabetes.
That program is the opposite of a chance to rest on their laurels. Rather, it is a battle cry and clear proof that the world needs what Umemba and Creel are trying to accomplish.
By creating DiD, the two hope to build a community focused on change. They want more advocacy activity, not less, and are working on outreach to the Asian, Native American, Latino, and other populations as well.
They’ll mobilize DiD in four “pillar areas” to increase the following for minority groups:
- representation among diabetes educators
- access to diabetes self-management resources
- education and support, knowledge of treatment options
- access and utilization of diabetes technology (African Americans, for example, appear to
use diabetes technologyat a rate of roughly 25 percent less than others).
Since launching, the org has developed what they call “Diversity Ambassadors” from all diabetes communities and are working to empower them to make changes in the four pillar areas.
They continue to look for sponsors, hoping their mission will flourish and bring change.
Since launching, DiD has also conducted four cohorts of its Virtual Diabetes Education Program. This is a 12-week program for people with diabetes. Using a data mapping tool called “Conversion Maps,” those participating in the virtual program are able to take part in six interactive discussions to explore feelings, information, and choices as it relates to living with and managing the condition.
During the second half of the program, participants stay connected with their virtual health coaches through the Map4health app that provides a platform to map out and work toward their health goals.
A total of 23 individuals registered for the first run of this program, and the org plans to continue hosting sessions every 12 weeks.
By mid-2022, the DiD org also plans to start a new T1D support group.
Working with health coaching venture Risely Health founded by Lauren Bongiorno, and Black Diabetic Girl founded by Kylene Redmond, the org plans to host a monthly diabetes support group for those using insulin (mostly T1Ds). It will be called “Insulin Inclusive,” and will be held every fourth Wednesday at 6:30 p.m. CST/ 7:30 p.m. EST /4:30 p.m. PST.
More details will be available at the DiD site once the support group launches.
How can two young women be the ripples the racial disparity pool needs for change?
“We are just two ladies who just met, who don’t have any money, but who care deeply,” Umemba says. “But it might just be that simple.”
Umemba said they’ve watched as larger organizations try to make changes, with some frustration.
“Organizations, too many to name, have been really good at talking the talk but they are not walking the walk,” she says. “The easiest thing those organizations can do is have (People of Color with diabetes) at the table in the first place. And I’m not talking about a token person. Put all kinds of people at the table where the decisions are made. That’s how change starts.”
For inspiration, they both point to the work of diabetes advocate Cherise Shockley, an Indianapolis woman with Latent Autoimmune Diabetes in Adults (LADA) who founded the weekly #DSMA chats on Twitter and speaks up for minority representation regularly in the Diabetes Online Community (DOC).
With this DiD organization, they hope to truly bring tangible change that’s good for everyone.
“This is about outcomes,” Umemba says. “Better health outcomes mean longer, happier lives, and also in the long run save money. Building a community that helps all feel welcome and heard, and also educates them, is a good thing for all of us.”