Why You Shouldn’t Delay Diabetic Macular Edema Treatment

When you don’t know you have diabetes — many people don’t — or it’s not being managed well, over time it can cause complications, including diabetic macular edema (DME). If left untreated, this serious eye disease can lead to blurry or double vision — and even vision loss.

“When DME is detected early and mild, treatment can often preserve vision and even reverse vision loss,” says Edward Wood, MD, a retina specialist at Austin Retina Associates in Texas. “However, when DME is not detected early, and there have been chronic changes to the retina, complete visual recovery may not be possible.”

How much of a hit will your eyesight take? According to a study published in March 2023, if DME remains untreated, 20 to 30 percent of people with the condition will lose at least three lines of vision on an eye chart within 3 years. That means, if you were able to read the lines of smaller letters, you’d gradually lose that ability, until you could only see the larger letters.

Why DME Treatment Gets Delayed

There’s no one reason DME treatment is delayed. Usually, it’s a mix of factors, including:

1. Delay in DME diagnosis A delayed diagnosis is the most common reason for not starting treatment early on, says Timothy Murray, MD, a retina specialist at Murray Ocular Oncology and Retina in Miami. “This typically only occurs if you haven’t seen someone that specializes in the care of macular edema: a retina specialist.” A person with diabetes may not notice significant vision changes or delay a DME screening recommended by an ophthalmologist or retina specialist, not realizing the importance of it, Dr. Murray adds. And, people might just be overloaded. “Because diabetes is such a complex condition to navigate, it may be overwhelming to prioritize eye care,” says Garvin Davis, MD, a retina specialist at Houston Methodist Eye Associates.
2. Delay in diabetes diagnosis About 1 in 5 people with diabetes don’t know they have it, the Centers for Disease Control and Prevention estimates. A person who isn’t aware they have diabetes isn’t going to know about any of the complications, including DME. Also, for many people, it can take 4 to 7 years following the onset of high blood sugar to get a diagnosis, according to an analysis of data from Kaiser Permanente in California. During that time, those high levels of blood sugar may be causing damage to the body.
3. Lack of adequate healthcare and finances Without good health coverage or access to care, it can be very difficult to get diagnosed with and manage diabetes, let alone DME. This is especially true for people of color, who experience higher rates of DME complications than white people. “Diabetes affects Black, Hispanic, Latinx and Indigenous people disproportionately, and the impact of this diabetic eye disease among patients from these backgrounds is unequal as well,” says Dr. Davis. Plus, newer DME treatments aren’t covered by all insurances and can be pricey, leading to disparities and a delay in types of treatment, he adds.
4. Anxiety around eye injections Specialists typically treat DME with anti–vascular endothelial growth factor (VEGF) injections into the eye to slow or stop vision loss. Many people are understandably nervous about getting shots in the eye, especially before the first treatment. “The concept of an eye injection is terrifying,” Murray acknowledges. “But, the reality is that if the injection is done well by a specialty team, it’s really a minor event.”
5. Pandemic-related delays The COVID-19 pandemic led to delays in DME treatment, because people either put it off or were nervous about visiting a doctor in person. A meta-analysis of studies found that people with DME who delayed anti-VEGF treatment by 4 months or longer during the pandemic experienced significant and likely irreversible vision loss, compared with those who were treated on schedule.

Treatment Options for Severe DME

Fortunately, there are effective treatments for DME, even for people whose eyesight has gotten progressively worse due to a delayed diagnosis. “Treatment for DME has evolved quite a bit over time,” says Davis. The top options are:

• Anti-VEGF therapy These eye injections may be given as often as once a month or every four months, depending on the severity of the DME and the type of medication used. Up to 40 percent of people with DME have significantly improved vision after 1 year of anti-VEGF injections, according to a study published in May 2023. And, for 9 out of 10 people getting the injections, the treatments at least stabilizes their vision, the American Academy of Ophthalmology found.
• Steroid injections While steroids help reduce inflammation, doctors typically try anti-VEGF therapy first. “If we inject a steroid into the eye of a patient that has not had cataract surgery, they will get a progressive cataract,” Murray explains. For this reason, steroids are most commonly used in people with DME who have already had cataract surgery.
• Laser therapy Although lasers used to be a first-line treatment for DME, anti-VEGF therapy has since replaced it. But, the treatment is still used in some cases. “Laser therapy may help slow or stop the growth of new blood vessels that could damage vision, but it may leave permanent blind spots in a person’s vision,” says Davis.

Visiting a retina specialist every year for a dilated retinal eye exam is the best way to help spot vision changes and prevent further loss. You should also talk to your doctor about the different DME treatments. “Each treatment has its own benefits and risks, so it is important to work with your doctor to decide which is best for you,” says Davis. Your doctor will tell you about the latest options, including those that may let you wait longer between treatments.

The Emotional Impact of Late Diagnosis and How to Cope

While a DME diagnosis may stir up some fears or anxieties, it’s far better to know you have the condition and start treatment than to not know and leave it unmanaged. In fact, not treating DME may actually heighten your fears. One study found that people who delayed anti-VEGF treatments had significant levels of stress and anxiety, especially if their vision was affected.

“People diagnosed with DME should remember that they are not alone. Approximately 750,000 Americans have DME,” says Davis. “Taking action by scheduling an appointment with a retina specialist to discuss treatment options can be empowering, which may also reduce mental and emotional stress.”

In addition to working with your regular care teams, there are many support groups and national organizations that can help you understand DME and live better with the condition, says Dr. Wood, including:

If you suspect there’s something going on with your eyes, get them checked out as soon as possible. Treating DME early is key — and so is sticking to your treatment plan. “With regular treatment, you’re going to be able to drive and read. Many of our patients keep 20/20 vision,” says Murray.