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As his mother aged, Skip Boyles would drive her to the eye doctor, where she underwent treatment for a little-known eye disease that eroded her vision and added extra burden to her later years.
He had hoped to avoid the same fate — but after Boyles’ father contracted the same debilitating disease near the end of his life, the younger Boyles began waiting for age-related macular degeneration to knock at his door, too.
After years of close monitoring, Boyles, 76, was eventually diagnosed with the disease and started treatment for it about six years ago. And thanks to his diligence and significant advancements in ophthalmology, he has bought his eyes much more time.
“I can’t extend my appreciation enough for the fact that there’s something that can be done,” said Boyles, of Finksburg. “It’s just a part of what I like to call ‘aging maintenance.’”
In less than two decades, doctors and researchers who specialize in eye care have gotten better at treating patients with age-related macular degeneration, which the U.S. Centers for Disease Control and Prevention cites as the leading cause of vision loss in people 65 and older. In Maryland, that demographic has been growing swiftly, according to U.S. Census data, expanding by nearly one-third from 2010 to 2020.
The disease, most prevalent in older adults, all but eliminates the central field of vision, making tasks such as reading, facial recognition and driving almost impossible for patients with advanced cases.
The bad news: It’s incurable.
The good news: Modern medicine, regular doctor’s appointments and early detection can slow the disease from getting worse and in some cases even improve a person’s vision for a time.
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The two types of macular degeneration — wet and dry — have different causes and treatment regimens. People with the more serious wet form experience vision loss due to abnormal blood vessels growing beneath the retina, the soft tissue at the back of the eyeball that sends a light signal to the brain for interpretation. Regular injections every few weeks can counteract the blood vessel growth and render the new vessels inactive.
The dry form is more common and less harmful, though it can progress into the wet form in some patients. With the dry form, a material called drusen builds up in the retina and can cause cells to die off and leave patches behind, like scorched earth of the eye. The U.S. Food and Drug Administration approved the first-ever treatment earlier this year for the dry form. And researchers in Bethesda from the National Institutes of Health’s National Eye Institute are now testing a stem cell-based therapy in humans after finding success in an animal study.
Estimates vary, but as many as 20 million adults in the U.S. may have some form of age-related macular degeneration, according to a study published in the JAMA Ophthalmology medical journal in November. With more adults living longer, some projections estimate that number growing quickly over the next two decades, which in turn could cause higher demand for specialists and overwhelm insurers.
“It scares me,” said Debra Grigsby, 70, a retired nurse from Carroll County who received the diagnosis in her 50s and gets treatment that maintains her vision. “The one thing I don’t want to do is go blind.”
The diagnosis, for many patients, can feel like a “prison sentence,” said Dr. Lisa Schocket, retina and vitreous diseases ophthalmologist at the University of Maryland Medical Center Midtown Campus who treats Boyles and Grigsby at the University of Maryland Eye Associates practice in Owings Mills, where she also serves as medical director.
The treatments are expensive, Schocket said, and insurers are starting to require that doctors prescribe less expensive drugs first before phasing in more costly ones.
Still, Schocket tries to encourage patients to look on the bright side.
“The answer is, yes, we’re going to have to do this forever, but I try not to say it that way,” she said. “I try to say: ‘We’re going to monitor this and treat you for the long term. And the goal is less frequent treatment.’”
Schocket said a patient with the wet form of macular degeneration could need injections as often as once a month, but a stabilized patient or those in the early stages might come in less frequently just for observation.
To catch the disease early, she recommends patients schedule a baseline eye exam with a doctor and follow up with a dilated eye exam every year. In Boyles’ case, she detected macular degeneration before he noticed any vision loss.
There is no clear cause of the disease, but there are factors that might worsen a prognosis, including smoking, diabetes, diet and hypertension, said Dr. T.Y. Alvin Liu, a clinician, researcher and assistant professor of ophthalmology at the Johns Hopkins School of Medicine.
About 40% of Liu’s patients have some form of macular degeneration, he said, and about 90% of those patients are white and aging, pointing to a possible link between the disease and genetics.
Most of Liu’s patients can stabilize or improve their vision with repeated visits, he said. But he also acknowledged that not everyone can afford or arrange to visit a doctor as often as needed.
“These patients end up getting undertreated,” he said. “This is the main reason people lose their vision.”
And despite improvements in the field, patients still feel frustrated with the diagnosis, said Dr. Janet Sunness, medical director of the Richard E. Hoover Rehabilitation Services for Low Vision and Blindness at Greater Baltimore Medical Center. Some patients report feeling depressed, she said, and lose motivation to get treated. Others recede from public life.
About one-fifth of Sunness’ patients hallucinate, she added, as the brain tries to restore the picture lost to the disease.
Thankfully, patients now have access to more magnifying technologies, vitamins and light sources than they once did, Sunness said, and voice-command services such as Siri and Alexa have helped many people cope with vision loss.
Who knows what another 20 years might bring?
“It used to be that people with the wet form of macular degeneration were legally blind,” Sunness said. “And that’s not the case now.”
hallie.miller@thebaltimorebanner.com
Baltimore Banner reporter Nick Thieme contributed to this article.
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Hallie Miller covers housing for The Baltimore Banner. She's previously covered city and regional services, business and health at both The Banner and The Baltimore Sun.
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