Phyllisa Deroze remembers wondering, Do people of color with diabetes use insulin pumps or continuous glucose monitors? Based on Google search images, it seemed the answer was that only white people used these advanced diabetes tools.
It was the same reaction she had after first searching for Black people checking their glucose with traditional fingersticks and taking insulin injections, too.
That thought stuck with Deroze — a literature professor in Florida with multiple master’s degrees and a PhD in English literature — during medical appointments in the early years following her initial type 2 diabetes (T2D) diagnosis.
Even though she did know some people of color who were using insulin pumps and CGMs, she found herself wondering if doctors for the most part just assumed most people of color would not be suited for these devices the same way their white counterparts might be.
Eight years later, in 2019, after years of struggling with her blood sugar levels, she finally found a doctor who would listen to her concerns and order the necessary lab work to confirm that, whoa… she’d actually been living with adult-diagnosed type 1 diabetes, or LADA (latent autoimmune diabetes in adults). It was then when she immediately started inquiring about diabetes technology in earnest.
Eventually, she got what she needed. But all of this led to an epiphany.
“If I leave the Internet wondering if Black people engaged in basic diabetes management and I’m looking at the same Internet as doctors, nurses, and medical personnel both professional and in-training, could they also be wondering the same thing? Did they assume, based on the absence of representation, that I wouldn’t do the basics?” Deroze mused.
Hers isn’t an uncommon story, as many people of color with diabetes say they didn’t immediately know about gadgets like pumps and CGMs, either because their doctors didn’t mention them, or because they didn’t see people of color represented in product marketing materials and official images from the manufacturers.
In this time of heightened awareness of diversity and inclusion, when racism is rightfully being called out as the public health crisis that it is, the disparities in healthcare access and marketing are also coming into the limelight.
For our D-Community, that includes the glaring lack of diversity among those using medical technology, and the broad negative impact that has on health outcomes for too many people with diabetes.
“There is medical racism that is happening,” says Dr. Aaron Kowalski, CEO of the national advocacy organization JDRF and a longtime type 1 himself. “People of color get prescribed (diabetes) therapies at a much lower rate and don’t have the same access that others have. We need tangible action.”
It appears that racism, implicit bias, and discrimination are embedded in healthcare just as much as in any other societal institutions. It’s a deeply rooted systematic issue that’s being exposed dramatically with the continuing COVID-19 crisis — as more people of color are negatively impacted.
State leaders, like Michigan Governor Gretchen Whitmer, are focusing more attention on this issue and have started implementing implicit bias training for all healthcare professionals.
Of course, it goes beyond just race and ethnicity. There are glaring socioeconomic inequities that determine who can and cannot access these best-in-class tools for their diabetes management.
This recent article from Harvard Medical School sums it up well: “Doctors take an oath to treat all patients equally, and yet not all patients are treated equally well. The answer to why is complicated.”
Plenty of recognized issues exist, says Dr. Korey Hood at the Stanford Diabetes Research Center. Provider bias impacts treatment or devices, sometimes based on race or ethnicity or perceived assumptions on what someone can afford or how “adherent” they may be.
Sometimes clinicians are just busy and make assumptions before walking into a patient’s room, without stopping to reflect what possible implicit bias might be baked into those quick pre-visit assumptions.
“It’s one of those things that sits under the surface and has been under the surface for a while,” he said. “Bias still exists and we need to do more. It’s part of the way healthcare is delivered, and that’s the foundation diabetes care is often delivered in. Too often, what’s presented in diabetes technology doesn’t look like the people it could be benefiting.”
With less than half the people in the United States with T1D using insulin pumps, and a much smaller percentage of those with T2D on pumps — and
Specific to the largest insulin pump manufacturer Medtronic Diabetes, according to data gathered by the new advocacy group People of Color Living with Diabetes, African American pump usage is 25 percent of its pump using customer base compared to 57 percent among all patients (and 61 percent among white patients).
“It is hypothesized that the 30 percent gap is a part of the 1.2-point gap in A1C between African American patients (9.6 average) and white patients (8.4 average),” the group notes.
This topic of disparities in diabetes tech use was a big theme at the American Diabetes Association’s huge annual meeting in June 2020, with several new studies presented.
One of those was from Dr. Shivani Agarwal, director of the Supporting Emerging Adults with Diabetes program at Montefiore in New York, who presented results of a clinical study including 300 young adults with type 1 diabetes (T1D).
Key findings demonstrated lower socioeconomic status, higher A1Cs, and much lower use of insulin pumps and CGMs among Black and Hispanic young adults. Compared to white young adults, Black and Hispanic young adults had persistent 50 to 80 percent lower odds of using an insulin pump. Black young adults in particular had 70 percent lower odds of using a CGM.
Researchers pointed out that existing data shows most pump users in the United States are white females, who often have better A1Cs and higher incomes and private insurance.
Online image searches illustrate this well, with an overarching theme of whiteness appearing when you search “insulin pumps,” “continuous glucose monitors,” “diabetes technology,” and related terms. While many have praised the peer support and “just like me!” mantras of the Diabetes Online Community (DOC), there hasn’t been much to date for people of color. Thankfully more and more Black and brown members of our community are becoming proactive in posting their own ‘life with diabetes’ images.
We talked to several of the major diabetes device manufacturers about their existing resources and plans for addressing diversity and inclusion. Most pointed to internal workgroups and committees, as well as stepping up their social media efforts promoting diversity.
Recently, the healthcare economics team at Medtronic Diabetes conducted an analysis using a database of Medicare beneficiaries with T1D and uncovered that the proportion of white patients who used any diabetes-related technology was three times higher compared to Asian or Hispanic or Black patients.
Medtronic officials tell us they haven’t published that data, but are examining that small subset and looking for ways to study larger population sets and bring those learnings into their product development, marketing, outreach, and healthcare provider conversations.
Dr. Hood at Stanford is actually working on this issue directly, interfacing with industry, patients, and healthcare providers. He leads the team that runs DiabetesWise, an online platform that serves as a “one stop hub” to help patients learn about and choose diabetes technology. It lets users match their needs with recommended tools, and provides product comparisons and patient testimonials about what it’s like to use these devices in the real world.
Hood says they’ve been working to diversify how they present and discuss technology. That includes working to scrub racial bias, and sufficiently address affordability issues.
“We need to do a better job amplifying stories within the diverse diabetes community, about the benefits of using different devices and having access to them. It’s not pushed as much as it could be,” he says.
Deroze in Florida, who runs Black Diabetic Info, thinks back to her own early days of diabetes when she didn’t see anyone of color like her. She began to wonder how wide that phenomenon stretched.
“My journey included becoming keenly aware of being a Black woman with diabetes because of the absence of Black people in diabetes spaces,” she shared.
She noticed a glaring absence of Black people shown in diabetes awareness campaigns, educational pamphlets, boards of large diabetes non-profits, management-level positions in diabetes companies, and pharmaceutical companies.
She describes the feeling poignantly: “Being in a house with the absence of light… it’s off-putting, uncomfortable, and makes you wonder how long will this last. The longer you sit in the darkness, however, you begin to get used to it even though you were never meant to live in your home in the darkness. You need the harmony of balance that both light and dark bring, like shadows and angles. Our vision is sharper when different perspectives are accounted for.”
Alexis Newman, who lives with T1D on the East Coast and works in healthcare herself, says she’s witnessed bias, discrimination, and racism happening firsthand — impacting people of color with diabetes as they try to manage and find the best tools and options for themselves.
Now in her 30s, Newman was diagnosed at just 18 months old, and started on an insulin pump as a teenager. She says she learned a lot about the tech on her own, without help from clinicians or educators. She remembers growing up and seeing how some of her white friends with pumps and CGMs didn’t seem to have to fight as hard as Newman did to get her device access.
Since she’s a power lifter, Newman started an Instagram page in part to post pictures of herself with weights while also wearing her CGM and insulin — because she never saw those images herself, and missed the inspiration of seeing people who “looked like me.”
Working now as a dietician in a large hospital, Newman says she definitely sees bias and medical racism in her profession.
Most of her patients live with T2D and are either Black or Hispanic, and many aren’t able to afford tools, she says. But it’s often not taken into account by the clinicians she works with, and as a result patients feel they aren’t being helped with options like they could be.
“It’s never overt, but is behind the scenes and is just uncomfortable,” she says. “There is a lot of micro-aggression, even in how some of the clinicians and staff talk about patients. Like on days we have a Spanish-heavy day, comments may be heard of ‘Welcome to Puerto Rico.'”
She says biases range from the language, to comments by some of her colleagues implying that their patients won’t listen “because, you know our patients…” She’s heard other comments that talk about the world ending and how some patients wouldn’t survive, passive judgements based on weight, looks, or other factors.
“A lot of patients do pick up on this, and request not to work with certain providers,” she said.
Specific to nutrition, Newman says there is a lack of cultural and ethnic diversity in the education and clinical talk, that doesn’t take into account certain foods or styles of eating from around the world. That all plays into D-tech use, as well.
In Chicago, actress Anita Nicole Brown, who lives with T1D, says she also was never told about diabetes technology early on, but isn’t sure if it was related to race.
“I know many say that it is due to the disparities among Black and brown communities. And although I will admit that those disparities do exist, I don’t feel those were the issues for me.”
For her, it was an overall lack of education.
“Most of my doctors are minorities, but they knew nothing about the technology that was available,” she said, noting that her endocrinologist is a white doctor with T2D and felt that insulin pumps were for “lazy” PWDs only. “Had my PCP, an Asian American woman, not believed that a pump would be beneficial for me, I may have never been given one!”
Having to do the research herself and look up insulin pumps, Brown says it was the OB/GYN during her 4th pregnancy who first mentioned that an insulin pump might give her better glucose level control and possibly prevent a miscarriage. The approval process took too long and she wasn’t able to access it in time, though.
Maybe, earlier knowledge about insulin pumps — and seeing more people of color representation featured in diabetes technology marketing — could have made a difference.
“We need to understand that T1D is not a white disease,” Brown said. “But we are severely slacking in the education department, especially with the medical personnel who are supposed to help all of us.”