Hoping to see again, local woman seeks funds for $15,000 device

Three months ago, Donna Witcher, who is legally blind, walked outside her Torresdale home and identified a stop sign.

"It was amazing," said Witcher, a buoyant 52-year-old. "I could actually see."

The secret to her sudden vision? A high-tech headset called eSight, which employs a tiny camera that sends high-resolution video through a computer and back to small LED screens in front of the viewer's eyes. Rather than magnifying objects, it breaks them down digitally and sends them back so that the severely visually impaired can interpret them in real time. According to the company, it works for about three-fourths of people with low vision; it does not help the blind.

But Witcher could only try it out - acquiring her own $15,000 unit is plunging her into a situation all too well known to patients seeking devices or drugs they can't afford and their insurance doesn't cover.

ESight is worn like eyeglasses, with no surgery required. Though advocates in Congress are pushing for Medicare to cover such low-vision devices, for now patients have to pay cash or rely on donations.

The Canadian device is registered for safety with the U.S. Food and Drug Administration. and is being studied in clinical trials at several major vision centers in the United States, including Johns Hopkins. Results from the trials, which will measure the visual acuity provided by the headset, are expected in December.

Witcher is trying to raise funds on eSight's website set up for that purpose, but it's been slow going.

Witcher's blindness stems from medication she took for 10 years to treat lupus, a chronic inflammatory disease in which the body attacks its own tissues and organs. Two medications for the disease, Plaquenil and chloroquine, have the rare side effect of irreversible retina damage; she has been diagnosed with retinal chloroquine retinopathy.

Witcher, who has had lupus for 26 years, worked in the deli at an Acme Market until 2004, when her eyesight failed.

"It first started when the numbers on the machines looked foggy," she said. "I never got cuts on the deli slicer, but when I started getting cuts, that's when I was diagnosed."

When sitting very close to her high-definition TV, Witcher can make out programs. This summer, watching The Rachael Ray Show, she first heard of eSight, when a vision-impaired man donned the headset and recognized his fiancée standing across the room.

"My sister said, 'Donna, look - that guy holds paper to his face to read just like you,' " Witcher recalls. "Maybe this could work for you, too."

That morning, they called the company and described her vision problems. She was told to visit her retina specialist (who had never heard of eSight) to check her visual acuity. After several tests, she was determined to be a candidate for the device, and a company representative visited to demonstrate the device indoors and out.

"Just to be able to see across the street made me want to cry," Witcher said. "I knew it was for me."

Knowing people like Witcher cannot afford the device, the company assigns them coaches to help them raise money. Jamie Silverberg, Witcher's coach, helped her set up her online site, and suggested she tell her story to local reporters. The company says that in the last three years, more than 700 people have acquired the technology; about 150 of them raised money through online donations.

A quick Google search shows that patients like Witcher are trying to raise money for the device on eSight's platform, as well as better-known outlets like YouTube, Facebook, and GoFundMe.

From bake sales to marathons to online campaigns, it's not at all unusual for patients and families who can't afford care or technology to reach out for help.

Bioethicist Art Caplan says it's also not unusual for companies like eSight to help prospective customers with fund-raising.

"But while this may make sense" for the company, he notes, "for patients who are legally blind or dying, it doesn't make much sense.

"What do we do for people who are going blind or are desperate to try experimental treatments?" he asked. "We say we want to help them, but we don't budget for it. We give people a right to beg for treatments."

And, he points out, there's not much fairness in this system.

"Crowdsourcing for medical help is not a viable system," Caplan said. "People who raise money are often those who are photogenic or have a social network. You can certainly try it, but there is also a burnout factor - people go for the first case, but by the 20th there is compassion burnout. It's a huge problem without an easy solution."

But Caplan, founding director of the bioethics division at New York University's Langone Medical Center, who formerly was at the University of Pennsylvania, says the device-makers aren't to blame.

"It's not uncommon and we shouldn't get mad at the companies," Caplan said. "These are political problems that need to be dealt with."

Meanwhile, Witcher struggles both with her vision and her lupus. On bad days she suffers chronic fatigue and arthritis. She wears a pacemaker for heart damage caused by the disease. Last year she fell on the snow and ice, her first fall in 10 years of blindness, which resulted in a possibly torn meniscus. But she can't get an MRI for a diagnosis due to the pacemaker. So she uses a cane to keep pressure off her injured knee.

Yet she remains relatively upbeat.

"I try to be positive," she says. "It's not a death sentence for me yet. I feel that if I give up, that's when I'm going to get sicker. The more functional I can be, the better I feel."

Update: Witcher recieved a $15,000 gift from a couple in N.J. Her glasses are currently in production.

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