People with chronic medical problems like Parkinson's disease can have a hard time finding a specialist who can help them manage the disease. Some patients are turning to doctors hundreds of miles away to get the care they need. But they're not driving to get to the doctor. They're doing the medical version of telecommuting, despite the fact that many insurers won't pay for it.
Deanna Ventura wasn't happy with the neurologist who was treating her Parkinson's. She was having trouble walking, bathing and doing her housework. "I knew that I needed more than what he was doing for me," she says.
But the closest specialist was in Rochester, two hours away from her home in upstate New York. And she doesn't drive. Now, the specialist comes to her, on a video conference call.
Ray Dorsey is a movement disorders specialist at Johns Hopkins Medical Center in Baltimore. That's 343 miles from Ventura's home in New Hartford, N.Y. But for the past four years, he has been her doctor, even though they've only met once in person.
"How about your Parkinson's disease?" Dorsey asked her during a recent checkup. "Any complaints related to your Parkinson's?"
"I find that I drop things a lot more," says Ventura, a 68-year-old grandmother. "I find that my balance is worse, which isn't too good anyways."
She's sitting in the conference room of a nursing home, just down the street from her apartment. She can see the doctor on a flat-screen TV. He can see her on his laptop.
The sound is scratchy but audible — familiar to anyone who Skypes with friends and relatives. "Do you know what today's date is?" Dorsey asks Ventura, checking to see if the disease is affecting her memory or cognition.
"Yes," she answers. "Today is May 20, and the year is 2011."
"And who's the secretary of state?"
"Pretty good!" Dorsey says. The doctor also tests her balance and motor skills, asking her to move her arms and hands, and walk across the room.
Parkinson's disease is a brain disorder that most commonly affects people older than 50. At least 500,000 people in the United States have the disorder.
It happens when the cells in the brain that make the neurotransmitter chemical dopamine are destroyed, making it hard for nerve cells to communicate. As a result, people can have tremors, trouble talking, impaired balance and loss of fine hand movements.
Parkinson's can be tricky to treat; the medications have to be adjusted regularly, and have many side effects. And because Parkinson's saps mobility, many patients can't drive.
Remote access to medical care has been touted as the next great thing for almost 20 years. And telemedicine is now more widely used in some areas, such as linking radiologists and stroke specialists to hospitals. It's been used to monitor patients' vital signs remotely, and to provide long-distance psychiatric care.
More Time With The Physician
But it has been much less successful in meeting one of the needs that seems most obvious: remote access to medical specialty care.
Technology is no longer the problem. The laptops, webcams and Internet access needed are now cheap and common, available in most homes and offices.
Clinical trials of telemedicine have found that the quality of care is at least as good as with in-person visits. In a small study run by Dorsey with the patients in upstate New York, the telemedicine patients had improved motor skills and quality of life, while patients making in-office doctor visits with their regular doctors did worse. Patients also say they like the visits better than in-office visits because they get more time with the physician.
Ventura says she has seen a dramatic difference in her quality of life and her mobility. She can now get around with a cane instead of a walker, and she even walks to church sometimes. "If it wasn't for this program, I would not be getting what I need to get for my Parkinson's."
But Medicare doesn't pay for Ventura's doctor visit. It covers telemedicine only if a person lives in what the federal insurer considers a rural area. New Hartford, which is outside of Utica, N.Y., isn't on the list, despite the fact that there are no Parkinson's specialists within a two-hour drive. Tony Joseph, the Presbyterian Home administrator, says: "Right now if I were going to bill a Blue Cross Blue Shield for a neurological consult like we're doing right now, they're not going to cover it."
So the Presbyterian Home, where Ventura goes for her telemedicine visits, holds fundraisers to come up with the approximately $40,000 a year they pay Dorsey and another neurologist. The home also covers the cost of a nurse and IT support, although most of the 45 people using the service aren't residents of the home.
"We do a Parkinson's awareness walk, and we've been very successful with that," Joseph says. Rashida Ali, the daughter of boxing great Muhammad Ali, was the grand marshal this year. The boxer has had Parkinson's for almost 30 years.
Bound By State Lines
Payment to doctors is traditionally based on the physical presence of the doctor with the patient, according to Jay Sanders, president and CEO of the Global Telemedicine Group. And there's one word for why: fraud. Medicare fraud costs the country at least $60 billion a year. But Sanders argues that telemedicine visits would be easy for insurers to monitor, because every visit is recorded.
There's one other big stumbling block to remote visits: Doctors licensed in one state can't treat patients in another. The only reason Dorsey, in Baltimore, can treat Ventura, in New York, is that he used to work at the University of Rochester and is still licensed in that state.
Getting licensed in another state is expensive and time-consuming. "Why do we have this ridiculous state-by-state licensure situation?" Sanders asks. "That impedes telemedicine."
Telemedicine doesn't cure all ills. Dorsey has to suggest that Ventura go see her internist when she complains of a pain in her neck. He can't figure out the cause without touching her. But watching her on the small screen has been enough to keep up with the changes caused by Parkinson's and to try to help control them.
"Believe me when I tell you that he doesn't miss a thing," Ventura says. "I never noticed that my lower chin was quivering. But Dr. Dorsey did."
For his part, Dorsey hopes that his ongoing experiment in telemedicine will inspire other doctors and patients to try it, despite the legal and regulatory barriers.
"We're at the point where we can remove geographical barriers to care," he says, noting that 140 million Americans are living with some sort of chronic condition. "Our hope is that the vast majority of those people can receive the care that they need from the specialists that are most qualified to provide them care."