The Effect of Race on DME Vision Loss

While anyone with type 1 or type 2 diabetes is at risk, DME tends to affect more Black and Hispanic Americans, 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.

• 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.

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• Cost of Diabetes Treatment On average, healthcare costs are 2.6 times higher for people with diabetes than people without the condition. And an estimated 14 to 26 percent of people with diabetes delay medications due to cost.

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• Less-Flexible Jobs Diabetes and its related eye complications affect people who are still of working age more than other eye conditions do, 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 says. Other factors, such as where treatment centers are located and lack of transportation, can play a role, too.
• Poor Insurance Coverage Health coverage plays a significant role in access to healthcare and being able to afford it. As of 2023, the rate of uninsured white Americans was 6.5 percent, compared with 9.7 percent of Black Americans and 17.9 percent of Hispanic Americans, according to KFF, a nonprofit specializing in health policy research.

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• 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 who can check your eyes and suggest that you see an eye doctor for a more thorough eye exam if needed, says Williams.
• Language Barriers An inability to communicate well in English can also affect the doctor-patient relationship, especially for Hispanic Americans 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 Hispanic Americans 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, in contrast with the makeup of 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 Black or Hispanic, which can also make it harder for potential candidates from these groups to trust the team. 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,” he adds.

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Despite the statistics, there are many steps you can take to keep 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 you manage diabetes, a PCP can examine your eyes and, if necessary, refer you to an eye doctor or 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 covered but may have some out-of-pocket costs, such as deductibles, and require step therapy, which is a cost-saving measure often required by insurance companies. It means starting treatment with a lower-cost medication, and if that is not effective, then you can switch to another, more expensive medication.

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3. Talk to a retina specialist about DME treatment options. The best treatment for you will depend on a number of factors, such as the severity of DME, how well you’re able to see (with glasses or without), and the particular financial and logistical burdens you may face. Once your vision declines to 20/50 or worse, even with glasses or contacts, your doctor will likely treat the condition with anti–VEGF (vascular endothelial growth factor) 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 may 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.

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4. Manage 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 changes 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.

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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’s Community Connection can help you find diabetes resources in your area, including financial and housing assistance and medical care.
• EyeCare America The American Academy of Ophthalmology’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 information on vision care financial assistance and DME.

Williams is optimistic that DME outcomes will keep getting better for Black and Hispanic Americans. “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.

• Diabetic macular edema disproportionately affects Black and Hispanic Americans due to various social, economic, and lifestyle factors that limit access to healthcare and proper diabetes management.
• Getting early treatment and meeting regularly with your doctor can help protect your vision and health.
• Remember to keep track of diabetes and get regular eye exams to catch DME early and manage it.