Randy Cutler, diagnosed with Parkinson’s disease 14 years ago, has never seen a movement-disorder specialist in person. But he has been treated by one for the past three years, thanks to a telemedicine program that connects him with a Parkinson’s disease specialist working in an office four hours away.
“It is unbelievably the best thing that could ever happen to us,” says Susan Cutler, his wife and caregiver.
The Cutlers live in Potsdam, N.Y., a small town near the borders of Vermont and Canada, and Randy’s health has deteriorated to the point where they can no longer travel. When the neurologist who had been caring for Randy moved away, the Cutlers joined thousands of other people with Parkinson’s disease who struggle to find an appropriate doctor.
“To be able to sit in your home and look at the doctor on the computer is a lifesaver.”
“The way that we provide care to individuals with Parkinson’s disease couldn’t be designed much worse,” says Dr. Ray Dorsey, a Parkinson’s disease specialist at the University of Rochester Medical Center in Rochester, N.Y.
“We ask older individuals with impaired mobility and impaired driving ability who live in rural and suburban areas to be driven by overburdened caregivers to urban centers that are large and complex to navigate,” Dorsey says.
Better Outcomes With Specialists
The barriers are stacked high. People with Parkinson’s disease often do better if they are treated by a neurologist with subspecialty training in movement disorders. But only 50 neurologists a year enter post-residency education, says Dr. Michael Okun, medical director for the Parkinson’s Foundation. And just a handful of those focus on movement disorders.
People diagnosed with Parkinson’s who are treated by a neurologist rather than solely a primary care physician are: 14% less likely to break a hip in a fall; 22% less likely to move to a skilled nursing facility within a year of diagnosis and 22% less likely to die within six years of diagnosis, according to a 2011 study by the Washington University School of Medicine in St. Louis.
Yet, about 40% of individuals with Parkinson’s who are 65 or older are not treated by a neurologist, Dorsey says.
One reason is the shortage of neurologists in the U.S. Another is that neurologists tend to work in large cities or at academic medical centers. That leaves large swaths of rural America with no neurologists. Traveling long distances to see a doctor is challenging for anyone with a disease that affects mobility. Eventually, it becomes impossible.
“Telemedicine has the potential to help us to address and overcome these roadblocks to care,” Okun says.
Video Visits Worked
And that has been the Cutlers’ good fortune, Susan Cutler says. For the past two years, Dorsey has examined her husband using a two-way video connection. He watches Randy walk so he can monitor his gait; he engages him in conversation so he can monitor his dementia.
“To be able to sit in your home and look at the doctor on the computer is a lifesaver,” Susan says.
To her surprise, Randy Cutler’s care has improved. For many years, he was prescribed several medications, some of which caused delusional thinking, Susan says; now he is down to two.
“He is one hundred percent better than he was before,” she says. “Of course, he’s declined in these last two years, but we are still better off than what we were going through before, and that’s because of Dr. Dorsey.”
Patients Like the Technology
Dorsey was the lead researcher in a study funded by the Patient-Centered Outcomes Research Institute that found telemedicine care could work for individuals with Parkinson’s disease.
The study began in 2014, when the research team recruited 200 individuals for a year-long clinical trial. The results: More than 90% of video visits were completed as scheduled, which is higher than the typical “show rate” for doctor’s office visits.
Also discovered in that study: Clinical outcomes for patients treated via telemedicine were the same as for those treated in face-to-face visits. On average, a virtual visit saved a patient and his or her caregivers three hours of time and 100 miles of travel.
At the end of the study, patients in the trial were asked which they preferred: face-to-face care from the doctor who had treated them for years or virtual visits from a doctor who had treated them via telemedicine for one year? The convenience of telemedicine scored big.
“On every aspect that we measured, including the quality of their personal connection, patients preferred virtual care from someone that they had never met,” Dorsey says.
Study Sparks State Organization
Those results prompted the launch of Parkinson’s Disease Care New York, a program in which Dorsey and his University of Rochester colleagues provide care via telemedicine to any individual with Parkinson’s living in the state — for free.
Since then, several neurologists across the country have started seeing individuals with Parkinson’s disease via telemedicine, although the practice is still quite rare.
Medicare Holds Out on Reimbursement
Telemedicine, in general, is becoming more common as state legislatures recognize its merits. Almost all states provide reimbursement for some form of live video in their standard Medicaid programs, according to the Center for Connected Health Policy.
Thirty-nine states and Washington, D.C. now mandate that private insurers must pay for medical services delivered via telemedicine.
To Dorsey’s great frustration, Medicare (the insurance program that covers most people with Parkinson’s disease) remains a holdout. Medicare does not pay for telemedicine services provided in a patient’s home — the patient must be located in an eligible facility, such as a health care clinic, hospital or skilled nursing facility.
He hopes people diagnosed with the disease and their caregivers will tell their Congress members that the Medicare program is impeding their care.
“If the one million people with Parkinson’s disease and their families say, ‘We’ve been paying taxes for the last fifty years, and now that we have a neurological condition associated with aging, we’d like to be able to get care regardless of who we are or where we live,’ I think their representatives would listen to that,” he says.
The Centers for Medicare and Medicaid Services recently finalized a plan to add telemedicine benefits for Medicare Advantage Plans, beginning in 2020. The benefit would include telemedicine in people’s homes.
Next Avenue Editors Also Recommend:
- Telemedicine: A Lifeline for Rural Residents
- Lack of Broadband Limits Telemedicine in Rural Areas
- 7 Signs Your Shaky Hands Are Due to Parkinson’s
Next Avenue brings you stories that are inspiring and change lives. We know that because we hear it from our readers every single day. One reader says,
"Every time I read a post, I feel like I'm able to take a single, clear lesson away from it, which is why I think it's so great."
Your generous donation will help us continue to bring you the information you care about. Every dollar donated allows us to remain a free and accessible public service. What story will you help make possible?