Did you know 42% of people with Parkinson’s don’t get the specialized care of a neurologist or movement disorder specialist and see only a general practitioner for their Parkinson’s-related healthcare needs?1  Did you know that people in 20 of 23 counties in Maryland do not have access to a Parkinson’s disease specialist?2  Research has shown that people with Parkinson’s who receive specialized care are better able to manage their symptoms and the disease.3  Because specialized care isn’t something found in every city and town across America, being able to see a neurologist using already-available everyday technology is an attractive and reasonable option.
Telemedicine is the remote delivery of healthcare services and clinical information using telecommunications technology including internet, cellular, wireless, satellite, and telephone. According to the American Telemedicine Association (ATA), more than half of U.S. hospitals now use some form of telemedicine, and in 2011 the Veterans Administration conducted more than 300,000 consultations via telemedicine.
The ATA reports that telemedicine provides a number of benefits:
For the Parkinson’s community, telemedicine has the potential to be a powerfully valuable service in terms of quality of life, better management of symptoms, and greater patient well-being. But, because of current laws, telemedicine is currently limited in scope and availability, so those who need it most can’t access it or benefit from it. How can we change that?
The Parkinson’s Action Network (PAN) is focusing on telemedicine from a policy perspective in two specific areas where we believe we can have an impact: state licensure issues and Medicare reimbursement.
State-based medical licensing presents a barrier to doctors using telemedicine to see patients across state lines if the doctor is not licensed in the same state as the patient. Because there are a limited number of neurologists in certain states, people with Parkinson’s may need or want to see a doctor in another state. PAN is working with colleagues on Capitol Hill to explore possible federal legislative solutions to this issue.
When it comes to Medicare reimbursement, Medicare beneficiaries are eligible for telemedicine services only if they are presented from an originating site located in a rural Health Professional Shortage Area  (HPSA) or in a county outside a Metropolitan Statistical Area  (MSA). This is frustrating because nearly 80% of Medicare beneficiaries do not live in an HPSA or counties not in an MSA, so they don’t qualify for telemedicine. This is another issue PAN is working on in partnership with other patient advocacy organizations whose constituents also need greater Medicare coverage options.
Amy Comstock Rick, PAN CEO, believes telemedicine could make a tremendous difference in the lives of people with Parkinson’s.
“Seeing a neurologist or movement disorder specialist makes a world of difference for someone living with Parkinson’s,” she said. “Unfortunately, this may mean driving for hours and hours to see one, if there even is a specialist in their state. We’re exploring issues around telemedicine policy to determine where we can have a real impact on behalf of the Parkinson’s community,” she said.
The Parkinson’s Action Network hosted a panel discussion on the issue of telemedicine at its 2013 PAN Forum in February. Dr. Ray Dorsey  (Johns Hopkins University), Dr. Peter Schmidt  (National Parkinson Foundation), and Dr. Guy Wilcox (Utica, NY) presented their thoughts, data, and ideas on where telemedicine is headed and how the removal of licensure and Medicare barriers could make a positive impact. The panelists also discussed the fact that neurologists can provide the same high-quality care via telemedicine that they do in-person in their offices.
The conversation will continue next month when PAN, along with other national Parkinson’s organizations, co-hosts of the 2013 Merinoff Symposia, which is entirely focused on Parkinson’s disease and telemedicine (April 9 – 11) .
Telemedicine is important to not just the Parkinson’s community. PAN is working with other patient advocacy organizations -- including the American Heart Association and the National Multiple Sclerosis Society -- to identify, from a broad patient advocacy perspective, how federal policy can support telemedicine as an option for those who need specialized care.
“If we can remove barriers to the kind of care people with Parkinson’s deserve, it will have ripple effects across the spectrum of disease care we can’t even begin to calculate,” added Rick. “We are excited to be working with other patient advocacy groups on this, and want to make a real difference.”
1 “Neurologist care in Parkinson disease: A utilization, outcomes, and survival study” [A.W. Willis et al; published in the journal Neurology; July 2012]
2 Movement Disorders Society directory; courtesy E. Ray Dorsey, M.D.; Johns Hopkins University
3 “Neurologist care in Parkinson disease: A utilization, outcomes, and survival study” [A.W. Willis et al; published in the journal Neurology; July 2012]
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American Telemedicine Association 
2013 Merinoff Symposia: Parkinson’s Disease 
Health IT Now Coalition 
Telemedicine and Medicare 
Telemedicine and Medicaid 
U.S. Dept. of Health and Human Services: Health Resources and Services Administration