Getting Gene Therapy Treatment

Dr. Yang examines young boy who receives gene therapy treatment at Casey
Dr. Paul Yang takes a look at Caspian Soto, 4, during an exam at the OHSU Casey Eye Institute, July 25, 2018 in Portland, Oregon. Caspian's mother Krista Soto, looks on. Caspian is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation. (OHSU/Kristyna Wentz-Graff)

“He’s never seen the stars. I can’t even take him to the Smithsonian -- and I love the Smithsonian -- because it’s too dark,” Krista Soto said. “To give him the opportunity to experience those things is indescribable. I can’t even begin to fathom the world that will open up.”

Available therapies

Luxturna gene therapy: Luxturna( voretigene neparvovec-rzyl) is a new FDA- approved gene therapy for children and adults with inherited retinal disease due to mutations in both copies of the RPE65 gene. The mutation is confirmed through genetic testing. To be eligible, patients must have enough remaining cells in their retina, the light-sensitive tissue in the back of the eyes.

How does Luxturna gene therapy work?

RPE65 gene mutations prevent eyes from making a protein that allows the visual cycle to work properly. With Luxturna gene therapy, a healthy copy of the RPE65 gene is delivered through an injection directly to eye cells to restore this important function. Surgery is performed on each eye on separate days, no less than one week apart.

Making an appointment

To find out if gene therapy treatment is right for you or your family member, you should first schedule an appointment with one of our doctors who specializes in inherited eye disease. 

As part of this diagnostic appointment, our doctors will review outside medical records, recommend additional testing (if needed), and conduct an eye exam. If genetic testing has not been done, an appointment with our genetic counselor will also be scheduled to help with the testing process. 

Schedule an appointment with the Gene Therapy Center or call: 503-494-8386.

Insurance and financial information

We will work closely with you to find out which benefits are covered and bill for visits for gene therapy treatment at Casey Eye Institute. Patients may qualify for limited financial assistance. Please contact the program coordinator for more details. 

International patients

Patients who are not a permanent US resident and/or citizen, must pay for medical services before receiving care. OHSU staff will work closely with the care provider and the patient to estimate the cost of care and coordinate the payment. Payment can be made by wire transfer or credit card. A 15% discount on medical services is available to anyone who pays in full prior to care.