Promoting Equity in Diabetes Education, Research and Management
Type 2 diabetes is a serious, chronic health condition that can lead to other serious health issues such as heart disease, stroke, blindness, and kidney failure. About 38 million Americans have diabetes, and about 90-95 percent of them have type 2 diabetes.
According to the CDC, in the last 20 years, the number of adults diagnosed with diabetes has more than doubled as the American population has aged and become more overweight or obese. Moreover, about 98 million US adults have prediabetes, and more than 8 in 10 of them don’t know they have it.
Black Americans are one of the largest ethnic groups to be impacted by diabetes, according to Leon Rock, CEO, African American Diabetes Association (AADA).
Leon Rock
“One in three Black adults has diabetes,” he said. “We are 60 percent more likely to be diagnosed, twice as likely to die of diabetes, and three times as likely to end up hospitalized for diabetes-related complications than the country as a whole. We are more than twice as likely to undergo diabetes-related leg or foot amputation and three times as likely to have end-stage kidney disease.”
Ringing the Alarm on Diabetes in African American Communities
The AADA is a new and emerging organization that was established to ring the alarm on the diabetes epidemic and health disparities in African American communities. It was formed to provide much-needed outreach, education, research, and advocacy for the millions of Blacks impacted by health disparities related to diabetes. It is the only national diabetes organization established by Black people and advocating for Black diabetes health equity.
“I co-founded the AADA after I learned that I have diabetes and went searching for answers,” said Rock. “I was disappointed to find limited resources geared to black men. Even the web sites of major diabetes organizations and health providers were devoid of black faces and experiences.”
Rock said one of the critical purposes of the AADA is education around the higher diabetes disease burden and the disparities in care Blacks receive. The AADA also wants to provide education around culturally tailored health care interventions and products that seek to improve diabetes care, improve health outcomes, and reduce health disparities among racial and ethnic populations.
Engaging Blacks in Clinical Trials
According to Rock, many Blacks do not have access to a regular family physician and even fewer have access to an endocrinologist specializing in diabetes care. That means they are less likely than most to know about and have access to clinical trials.
Diversity and inclusion are important in clinical trials, according to the National Institutes of Health, “because people may experience the same disease differently. It is therefore essential that clinical trials include people with a variety of lived experiences and living conditions, as well as characteristics like race and ethnicity, age, sex, and sexual orientation, so that all communities benefit from scientific advances.”
“Researchers and research sponsors face a real hurdle in getting Blacks involved in clinical trials due primarily to our generational knowledge of the Tuskegee experiment,” Rock said, referring to the decades-long government research program in which impoverished African American sharecroppers were deceived by researchers about their diagnosis of syphilis and subsequent treatment with ineffective medications. “Even the younger generation – my 12-year-old granddaughter knows about the history – is mistrustful and leery of getting involved with medical research as a result.”
Rock said it is imperative for clinical trial coordinators to reach out to potential trial participants by meeting them in their communities, including places researcher normally don’t go, like public housing, senior communities, low-income community health centers, libraries, Black churches, barber shops, hair salons, and historically black colleges and universities.
“We encourage AADA members and allies to act as ambassadors and advocates for participating in trials by addressing the issue from the vantage point of the Black experience,” Rock said. “It’s also important for us to get the word out that clinical trials have changed since Tuskegee in terms of ethical mandates and institutional review boards. Nobody is talking about that.”
Growing the African American Diabetes Community
As a relatively new organization, the AADA is working to expand its outreach and advocacy efforts in communities nationwide. It offers memberships to community-based organizations (CBOs) and encourages CBOs to create local, faith-based, and college/university chapters. It also offers several individual membership levels that allow people to be part of a community dedicated to helping those living with and affected by diabetes. The Association’s plan, Rock said, is to create chapters in every state in the country.
Rock encouraged Black people living with diabetes to join the AADA as the association spreads the word about how diabetes impacts the Black community and added a special call for those with diabetes to advocate for themselves and their health: “Take control of your weight, diet, and overall health. See a doctor at least four times a year to check your blood sugar levels and your A1C. Be honest with your doctor about what you’re eating, the medications you’re taking, and any neuropathy in your limbs. The risk of amputation is real, so ask your doctor to check your feet! If they don’t, find a new doctor.”