AEVR Briefing Recognizes Second Annual Thyroid Eye Disease Awareness Week and Women’s Vision Health Issues

Kimberly Cockerham, MD, FACS (Central Valley Eye Medical Group/Senta Clinic)
Kimberly Cockerham, MD, FACS (Central Valley Eye Medical Group/Senta Clinic)

On November 17, AEVR’s Research Saving Sight, Restoring Vision Initiative held a virtual global   Congressional Briefing entitled Better Understanding Thyroid Eye Disease (TED): Physician, Patient, and Caregiver Perspectives, with a Discussion on Women’s Vision Health that was held during the second annual TED Awareness Week (November 14-20, 2021).

The event featured clinician Kimberly Cockerham, MD, FACS, who is a board-certified ophthalmologist with fellowship training in both Neuro-Ophthalmology and Oculofacial Plastic and Reconstructive Surgery. A decorated veteran who trained and was on faculty at Walter Reed Army Medical Center, she  recently began to split her time between two practices in California—Central Valley Medical Group in Stockton, Modesto and Manteca, and the Senta Clinic in San Diego—the latter due to a shortage of neuro-ophthalmologists in southern California due to the COVID-19 pandemic.

Dr. Cockerham provided an overview of autoimmune diseases in which an individual’s immune system attacks their body. She explained that TED, also called Graves’ ophthalmopathy or Graves’ Eye Disease, is an autoimmune disease that occurs in up to 50 percent of individuals with Graves’ disease and is caused by an overactive thyroid gland in a condition called hyperthyroidism. TED can occur in patients who already know they have thyroid disease–– about 80 percent of TED patients will present symptoms within 18 months of their Graves’ disease diagnosis––or it may be the first sign of Graves’ disease. While TED often occurs in individuals with hyperthyroidism, it is a distinct disease and treating hyperthyroidism may not resolve visual symptoms and changes. TED can be associated with a family history of the disease and, although it usually affects individuals in age ranges 40-49 and 60-69, it can occur at any age. Although females have a greater incidence of TED than males, it is usually more severe in males. Smoking can cause an 8-times increased risk for TED and a longer “active” phase of the disease,

Patient advocate Ron Barela and his spouse/caregiver Vickie.
Patient advocate Ron Barela and his spouse/caregiver Vickie

In the “active” phase of TED, the main symptoms include inflammation and increased amounts of the tissue, muscles, and fat behind the eye (in the bony socket) causing the eyeballs to bulge out, a condition called proptosis. If the eye is pushed far enough forward, the eyelids may not close properly when blinking and sleeping, causing the cornea to become unprotected, dry, and damaged. The enlargement of the tissues and muscles of the eye may prevent it from properly working, which affects eye position (called strabismus) and movement, which can lead to diplopia, or double vision. In severe cases, the inflammation and enlargement of the tissues, muscles, and fat behind the eye compresses the optic nerve, which connects the eye to the brain, thereby causing vision loss. TED impacts the way a patient sees, looks, and feels, affecting their ability to perform activities of daily living (driving, reading, working on a computer) and often resulting in depression, anxiety, and social isolation.

Although medical therapy during the “active” phase of TED has included steroids, radiation, selenium supplements, and other immunomodulatory treatments, these have generally been ineffective in stopping the progression of the physiological changes in and around the eyes and may have their own side effects. As a result, most patients have sought surgical intervention during the “fibrotic” stage of the disease, which includes orbital decompression, extraocular muscle surgery, eyelid repositioning, and soft tissue draping. 

Kathryn Godburn Schubert, MPP, CAE (Society for Women’s Health Research)
Kathryn Godburn Schubert, MPP, CAE (Society for Women’s Health Research)

Researchers funded by the National Institute of Health (NIH), including its National Eye Institute (NEI), and by private industry have sought to identify the molecular pathways that lead to manifestation of the disease. They discovered that a protein, Insulin-like Growth Factor-1 Receptor (IGF-1R), is overexpressed in Graves’ disease and subsequently that a fully human monoclonal antibody called Teprotumumab inhibited IGF-1R 2 expression, blocking autoantibodies from attacking orbital cells, reducing inflammation, and preventing excessive cell growth/buildup behind the eye. In a series of safety and effectiveness clinical trials, Teprotumumab had been shown to be highly effective in reducing eye bulging and double vision and demonstrated a positive benefit-to-risk profile in treatment of TED with disease-modifying activity. As a result, a drug therapy version of Teprotumumab was approved in early 2020 by the Food and Drug Administration (FDA) as a first line agent in treating the “active” phase of TED. 

Dr. Cockerham concluded by observing that effectively managing TED requires early diagnosis and treatment, active monitoring, and co-management of the disease—the latter ideally engaging physicians who specialize in the thyroid, endocrinology, and ophthalmology.

Ron Barela, a retired Law Enforcement and Commissioned Officer in the U.S. Coast Guard, provided the patient perspective, and his wife Vickie, a Veteran Registered Nurse, provided the caregiver perspective. Ron described the progression of the disease—especially the extent of optic nerve compression that jeopardized his vision and his career—as well as the drug therapies and surgeries that he experienced, noting that double vision still impacts his life. Vickie described the challenges that Ron faced in performing activities of daily, observing that “he was losing parts of who he was.” Ron concluded by stating that “the worst part of the disease is the fear of the unknown.”       

Kira Baldonado, MPH (Prevent Blindness)
Kira Baldonado, MPH (Prevent Blindness)

After the Barelas shared their experiences with TED, Kira Baldonado, who serves as the Vice President of Public Health and Policy at Prevent Blindness, interviewed Kathryn Godburn Schubert, MPP, CAE, who serves as President and CEO of the Society for Women’s Health Research. In describing the Society’s many activities on behalf of women’s vision issues, Ms. Schubert emphasized that women experience a disproportionate incidence of eye disease, including that from age-related macular degeneration, glaucoma, dry eye, and autoimmune diseases, such as TED.   

AEVR wishes to thank co-sponsors Research to Prevent Blindness, Prevent Blindness, Society for Women’s Health Research, Association for Research in Vision and Ophthalmology (streaming support), Novartis (streaming support), and Horizon Therapeutics for providing patient advocate/caregiver Ron and Vickie Barela.