A Person of Action: One Woman’s Clinical Trial Experience
By Rich Shea
Julie Anderson admits she’s stubborn. “It’s the German in me,” she says. “I don’t ever give in.” So when she was diagnosed with retinitis pigmentosa, or RP, a hereditary disease that progressively diminishes eyesight, the mother of three didn’t crawl into a hole. She joined FFBand, for more than a dozen years, has been its Minneapolis chapter’s president. And when she heard, in the mid 2000s, that the company Neurotech would be conducting a Foundation-funded clinical, or human, trial for a treatment of RP at the University of Minnesota, she was literally the first in line to be screened for approval.
The treatment, called ECT, for “encapsulated cell technology,” involves the implantation of a protein-releasing capsule the size of a grain of rice into one eye. As part of the trial, however, participants weren’t supposed to know which eye was being treated; so both had to be operated on. This didn’t scare Julie; in fact, although ECT is designed to slow or halt vision loss, “I had hopes it would restore my vision,” she recalls. “No one ever told me that was a possibility, but that’s where my brain went.”
When notified she’d been accepted as a trial participant, the first thing Julie did was cry. “And I’m not a crier,” she says. “But I cried each time I told anyone about it, and I told a lot of people. I was just so happy—these were tears of joy.”
The surgery went well, although she had to wear bandages over both eyes for a few days and wait for the stitches to dissolve, which caused discomfort. Even after they had, her eyes were severely bloodshot—a challenge considering she’d scheduled her daughter’s high school graduation party for just 10 days after surgery. So, Hollywood-diva-style, Julie wore sunglasses throughout the event.
She also noticed something curious. The web page for her 5K VisionWalk team was showing a flurry of donation activity. She discovered, later, that the sedation given to her just prior to surgery had made her extra-talkative. And although she was told only that she’d been “entertaining and funny,” Julie had evidently convinced the entire surgical team to support the walk.
Over the next two years, Julie made roughly 20 visits to U of M, where her eyes were tested, photographed and measured for results—none of which indicated a significant change in vision, either positive or negative. She did, however, experience one side effect. “The protein inside the implant constricted the pupil in me and some other patients, so I knew which eye had the implant,” Julie recalls. “I could feel it—a nagging or pulling—but it wasn’t painful. My acuity got much better in the treated eye. The researchers attributed it to the ‘pinhole’ effect—the pupil is so small, it’s easy to focus with it.”
After the implant was removed, and Julie’s eye returned to normal—which, for her, meant no restoration of vision—she was far from disappointed. The development of ECT, dependent on the trial’s results, is ongoing and may eventually prove fruitful. And that’s what motivated Julie to participate in the first place.
“When I was diagnosed with RP, the fact that there was no treatment or cure wasn’t acceptable to me,” she says. “But I got involved with FFB knowing the research was progressing. And I wanted to help do something about it—by raising funds and, if I had the chance, advancing the science.
“Plus, I wanted to show my own kids and others I come across through the Foundation that when something like RP drops in your lap, you have a choice—you can be a person of action or a victim. It’s up to you. I wanted to show them I’d get in the trenches, do what it takes.
“So if I have the chance to participate in another trial, I’ll jump at it.”