AEVR Hosts World Keratoconus Day Congressional Briefing With Clinicians Speaking to Patients about Research and Treatments

  

Taylor Young (National Keratoconus Foundation)
Taylor Young (National Keratoconus Foundation)

To watch the video of the briefing, click here.

On November 10 and in recognition of World Keratoconus Day 2021, AEVR’s Research Saving Sight, Restoring Vision Initiative joined with the National Keratoconus Foundation (NKCF) and co-sponsors (see box below) in presenting a virtual global Congressional Briefing entitled Speaking with Keratoconus Patients about Research and Treatments that focused on keratoconus (KC), a degenerative disease where the cornea—the clear covering of the eye—thins or bulges, leading to scarring and blurred or distorted vision. This is a disease that can cause severe disability and functional blindness.  

In providing a welcome, Taylor Young, NKCF Assistant Director, recognized that KC usually begins during teenage years and worsens until middle age, with vision changing as the corneal tissue weakens, resulting in blurred or double vision and halos or streaks around lights. Corrective glasses or contact lenses may not be able to keep up as the cornea changes shape during disease progression, resulting in difficulty with work or school, viewing a computer screen, and getting around at night. Since 1986, the NKCF has been promoting KC research, especially since advanced diagnostic testing has shown that far more people are affected than initially thought. Once estimated to affect 1 in 2,000 Americans, its prevalence may be closer to 1 in 200 individuals, with certain ethnic groups and geographic regions experiencing greater incidence.      

Christopher Rapuano, MD (Wills Eye Hospital)
Christopher Rapuano, MD (Wills Eye Hospital)

Christine Sindt, OD, FAAO (University of Iowa Carver College of Medicine)
Benjamin Sindt
Benjamin Sindt

Clinician Christopher J. Rapuano, MD, who serves as Chief of the Wills Eye Hospital Cornea Service and Professor of Ophthalmology at Sidney Kimmel Medical College at Thomas Jefferson University, showed graphically that a normal cornea has a round shape, much like that of a basketball, which focuses light at one point that enables good vision. KC corneas are thin and pointy, shaped much like that of a football, which defocuses light entering the eye, causing poor vision. Non-modifiable risk factors for KC include genetics, while modifiable factors include excessive eye rubbing.

Clinicians seek to improve a patient’s vision while also monitoring and inhibiting KC progression. Contact lenses are often an initial treatment and can vary from soft to hard lenses—the latter placing a smooth surface over the cornea to better focus incoming light—or hybrid lenses, a combination of hard center/soft outside lens for greater comfort or a soft lens “piggybacked” with a hard lens over it. For more advanced KC, clinicians may fit a scleral lens that vaults over the entire cornea. All of these options require a clinician with experience in fitting patients with KC, such as fellow featured speaker Christine Sindt, OD. Dr. Rapuano also described surgical options, including reshaping the cornea through small plastic inserts called intrastromal corneal ring segments (ICRS), which can flatten and normalize the cornea, as well as a corneal transplant—the latter in cases where KC is severe and has caused corneal scarring—with greater than 95 percent of patients reporting good vision a year after surgery.

Regarding efforts to inhibit KC progression, he described corneal crosslinking (CXL), a minimally invasive therapy that received Food and Drug Administration (FDA) approval in 2016. This procedure involves removing the surface layer of the cornea, followed by application of Vitamin B2 (riboflavin) eyedrops and ultraviolet light. CXL, which stiffens the corneal collagen and halts or slows disease progression, is now the standard of care for progressive KC. Dr. Rapuano stated that CXL is successful in about 95 percent of cases and has a 1 percent complication rate. Research is resulting in advances to the procedure. In closing, he recognized that many advances in eye banking and transplant techniques, as well as imaging technology to diagnose and treat KC, have emerged from research supported by the National Eye Institute (NEI) within the National Institute of Health (NIH).        

Clinician Christine Sindt, OD, FAAO, who serves as Director, Contact Lens Service and Clinical Professor of Ophthalmology, noted that her experience with KC goes back 25 years when she was applying for a grant to study it and was told it was an orphan disease. But dealing extensively with KC patients and their fear of the unknown has driven her to focus on it, which was amplified when her son, Benjamin, a student who was diagnosed four years ago with KC at age 21. Benjamin spoke about his patient journey—which has included wearing corrective contact lenses and scleral lenses and having CXL surgery—and the overall impact that KC has had on his quality of life.

Dr. Sindt continued by providing a more detailed discussion of the evolution of contact lenses for vision correction, especially their use in KC, and how clinicians and researchers have built upon what they have already learned to advance treatments. She then described how clinicians create an individualized “care map” with each patient to define what success will look like, and how that is ever-evolving, She concluded by stating that, “As a clinician, educator, inventor, and a mom, I know that there are so many opportunities to improve the patient experience to prevent this disease and to improve outcomes, so the real question is, what is next?”                 

 

AEVR wishes to thank NKCF and co-sponsors Research to Prevent Blindness, Eye Bank Association of America, Association for Research in Vision and Ophthalmology (streaming support), Glaukos (event management support), and Novartis (streaming support).