The Effect of Race on DME Vision Loss

Diabetes comes with its share of complications, one of which is diabetic macular edema (DME). Roughly 1 in 14 people with diabetes develop this eye disease that can lead to loss of vision, according to Cleveland Clinic. Early diagnosis and treatment of DME are key to stabilizing and even reversing eye damage. But, for a variety of reasons, people of color — particularly Black Americans — may have a harder time getting diagnosed and treated.

Black people have more than twice the risk of DME of non-Latino white people and poorer outcomes, compared with white and Latino patients, according to one study.

Who Is At Risk for DME and Why?

While anyone with type 1 or type 2 diabetes is at risk for the condition, DME tends to affect more Black and Latino people, thanks to complex social, economic, and lifestyle factors that can affect overall health. “These differences play a large role in the prevalence of diabetes in general and, therefore, the development of diabetic macular edema,” says Basil Williams, MD, an associate professor of ophthalmology at Bascom Palmer Eye Institute in Miami, where he is also vice chair of diversity, equity, and inclusion.

Adults in the United States have a 40 percent chance of developing type 2 diabetes over their lifetime, but that number is over 50 percent for Latino adults, according to the Centers for Disease Control and Prevention (CDC). And, Black Americans are 60 percent more likely than non-Latino white Americans to be diagnosed with diabetes. This can be influenced by:

• Greater risk of related conditions: Many of the same factors that cause type 2 diabetes are linked to risk factors for DME, such as high blood pressure, says Dr. Williams. These can also include being overweight and not getting exercise.
• Lack of access to quality foods: People who live in low-income urban, rural, and tribal areas often lack access to affordable, healthy foods, according to the CDC.
• Cost of diabetes treatment: The healthcare costs of people with diabetes are 2.3 times those of people who don’t have diabetes, another study found. And, up to 20 percent of people with diabetes report reducing or delaying medications due to the cost.
• Less flexible jobs: Diabetes and its related eye complications affect people who are still of working age more than other eye conditions, Williams notes. It may be hard for people to take time off work to see a doctor about vision problems or diabetes. “Lower-income workers tend to have less access to paid leave and are less likely to take time off from work. Additionally, lower-income workers tend to be disproportionately Black and Latinx,” he adds. Issues like where treatment centers are located and lack of transportation can play a role, too.
• Poor insurance coverage: Health coverage plays a significant role in accessing healthcare and being able to afford it. As of 2021, the rate of uninsured white Americans was 7 percent, versus 11 percent of Black Americans and 19 percent of Latino Americans, according to KFF, a nonprofit specializing in health policy research.
• No relationship with a primary care doctor: People with DME may not realize their vision problems need to be treated, particularly if the changes are subtle or don’t affect their ability to work. That’s why it’s key to have an ongoing relationship with a primary care doctor (PCP) who can check your eyes and suggest you see an eye doctor for a more thorough eye exam, Williams explains.
• Language barriers: An inability to communicate well can also affect the doctor-patient relationship, especially for Latino people whose primary language is Spanish.
• Distrust of the healthcare system: “There have been historic challenges with the healthcare system, particularly in the Black community, which sometimes affects relationships with their physicians and trust,” says Williams.
• Lack of representation in clinical trials: Without data from clinical trials, it’s hard for researchers to know how treatments may affect people of different ethnicities. Although strides are being made to correct it, Black and Latino people are still significantly underrepresented in clinical trials for many health conditions, including DME. Williams coauthored a study that found DME clinical trial participants in the United States are disproportionately white and male, compared with the population undergoing treatment for DME. “This may be in part due to aforementioned language barriers and trust issues,” says Williams. Clinical trial team members themselves tend not to be from those racial backgrounds, which can also make it harder for potential Black and Latino candidates to trust them. Finally, “A lot of DME clinical trials are designed to exclude patients with the most advanced diabetes, so that also probably plays a role in clinical trial enrollment,” Williams adds.

6 Steps to Managing DME Better

Despite the statistics, there are many steps you can take to keep your diabetes and DME in check. Consider the following:

1. Establish a relationship with a primary care doctor. If you don’t already have a PCP you like and trust, check your insurance coverage and find one. If you need health insurance coverage, visit Healthcare.gov. In addition to helping manage your diabetes, a PCP can examine your eyes if your vision is blurry and refer you to an eye doctor to check for cataracts and other eye conditions. If no evidence is found in those checks, you’ll be referred to a retina specialist, who can diagnose and treat DME.
2. Call insurance companies. Before you start treatment, it’s important to understand what insurance coverage is available to you. Most DME treatments are completely covered but may require stepwise therapy, meaning the dose or frequency of treatments may increase or decrease when necessary.
3. Talk to a retina specialist about your DME treatment options. The best treatment for you will depend on a number of factors. These include how severe your DME is, how well you’re able to see (with glasses or without), and what the financial and logistical burden will be. Once your vision progresses to 20/50 or worse, even with glasses or contacts, doctors treat DME with anti–vascular endothelial growth factor (VEGF) medicine, which may help reverse vision loss. This requires going to your retina specialist for eye injections. If anti-VEGF treatment doesn’t help enough, a retina specialist can inject steroids into your eye to reduce inflammation, but this can also increase the risk of glaucoma and cataracts. Laser therapy is also an option, but it doesn’t reverse vision loss.
4. Manage your diabetes. “One of the most significant and important treatments for DME is controlling underlying diabetes and high blood pressure really well,” says Williams. “A lot of patients coming to the ophthalmologist for decreased vision have a new diagnosis of diabetes. By treating the diabetes alone, that will also have long-term significant implications for DME.” Treating diabetes may include diet and exercise, as well as insulin or other medications. If you smoke, it’s important to quit.
5. Start DME treatment early. Once your retina specialist makes a diagnosis, it’s crucial to start DME treatment and stick with it. A study found that anti-VEGF therapy can improve the thickness of the macula, which can stabilize and even improve vision. It’s safe and effective for people with DME.
6. Get support from reputable organizations. There are many organizations that can help you live better with diabetes and DME, including:

• American Diabetes Association: This national organization has a community connection that can help you find diabetes resources in your area, including financial and housing assistance and medical care.
• EyeCare America: The American Academy of Ophtalmology’s public service program provides access to primarily free eye care and resources for seniors.
• VSP Vision: For people without vision insurance, VSP Vision offers a program called Eyes of Hope, which covers comprehensive eye exams and glasses.
• Prevent Blindness: This nonprofit has vision care financial assistance information, as well as information on DME.

Williams is optimistic that DME outcomes will keep getting better for Black and Latino people. “As time continues, we will hopefully turn these conversations more into action, in terms of assessing our individual practices and seeing how set up they are for people of different backgrounds,” he says.