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Following are the comments I made at the congressional briefing on 3-13-14:

Thank you for the opportunity to take part in this briefing. My name is Israel Robledo. I was diagnosed with Parkinson’s Disease in 2007 at 42 years old. I had dealt with the symptoms that included tremors, rigidity, balance issues, and slowness in movement five years prior to that time. As a result of my neurologist in Midland, Texas, whom understood the importance of a good health-related quality of life, I was able to and continue to receive the best specialized care for my progressive, neurodegenerative, incurable disease. I must share that I consider myself blessed to have the partnership with a neurologist who said, “I don’t know what it will be like for you in five or ten years, but in the meantime, I want you to have the best quality of life possible”. He went on to say that he could diagnose me, but with limited exposure to it in his practice, that he preferred that I go to whom he considered the world’s best when it came to treating Parkinson’s. This world-renowned expert happened to practice in Texas. Houston, to be exact. I travel to Houston twice a year (1000 miles round-trip) for my medical care under Joseph Jankovic in order to be able to function the way you see me today. Now, mind you, it is a four times a day dosage regimen that does not actually control the disease, but helps to prolong the amount of quality time I have, until the elusive cure is found, or the disease progression slows me down, and I won’t be able to function. I continue to work full time as a special education teacher, with no accommodations. I would be remiss if I didn’t thank my supervisor, Nancy Isaacs, as she has been a constant source of support, which is not the norm when it comes to living and working with Parkinson’s. With the Americans With Disabilities Act, there is the law and there is reality, and that is an issue in itself.
It was during this time when I started my visits to Houston and subsequent advocacy work that I promised myself to do what I could, while I still could, to make a difference in the lives of over a million people in the U.S. Living with Parkinson’s. In essence, I want for all living with, and dealing with this disease to have the best medical care possible. Knowing the limitations of being able to get patients to specialists, of which there are a limited number around the country, the answer became clear as the idea and use of telemedicine came into play. A great idea that would yield great results, but…
What if a movement disorders specialist could take full advantage of existing technology to treat patients? They could, but issues regarding payments and medicare reimbursement first have to be resolved.
What if they could see any patient, anywhere in the country, providing a standard of care not matched by many? They could, but only if they’re licensed in the state the patient lives in…
So, simple solutions become clouded in rules and regulations that need changing and updating.
Physicians want to help, but feasibly, it’s just not there.
Parkinson’s in particular with a visual-type exam lends itself well to the telemedicine framework. We are also aware of the appropriate use for many other medical conditions. The importance of this lies in the effective management of medical conditions. I can definitely benefit from it, along with many of my friends and others in the patient community that want to live productive lives. I’ve been asked what a movement disorders specialist can do that a neurologist can’t. The answer is that they have much more experience and expertise in finding the right combination of medications that work for us. The key is in finding the maximum benefit, with the least amount of medications. We need much more of this happening, and telemedicine can get us there.
Most would think that only rural settings would benefit from telemedicine, but patients in urban settings would benefit equally, especially when we remember, and constantly remind ourselves that diseases and medical conditions cover all age ranges. The elderly in our patient communities need to be taken care of, especially. Financial limitations, physical limitations, safety issues, among the elderly are just some the issues that will be alleviated if telemedicine reaches its full potential.
With the current work with patients and the research being conducted to show the effectiveness of telemedicine in the Parkinson’s community, researchers and clinicians, Drs. Ray Dorsey and Kevin Biglan at the University of Rochester, are leading the charge to make telemedicine a reality for many.
The removal of barriers that keep the best care possible from being provided is where your help is needed.
It’s ironic that we as patients have the ability to see the best in their field, regardless of where we live, and most are prohibited from doing so because of cost issues, among many other issues, but the best in their field can’t see or won’t see (although many want to) and use their expertise to help so many- due to restrictions.
Together, we’re in a position to see a major overhaul in the regulatory system, and with your help, we can definitely get this done faster.
Thank you for your time and attention.

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5 thoughts on “Congressional Briefing Comments – The State of Technology-Enabled Care

  1. Reblogged this on thereallisabain and commented:
    Proud of my fellow Parkinon’s advocate! He so eloquently lends his voice to the entire Parkinson’s community, and we are forever grateful for his continued efforts.

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  2. Hi israel,Your comments are right on. It is so frustrating when a treatment or a change in research methodology is found to actually work, but then gets held up by FDA regulations or other bureaucratic resistance. Another reason patients should be part of the entire process. I’ll pass your blog posting on,BTW, i was contacted by one of the Un. of Rochester Telemedicine researchers last week (via the Fox trialfinder) and i will be participating in one of their studies. The first session is on Monday — if i can get the software loaded and working.Thanks for all you do for the PD communitylinda

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    • Thank you for sharing and please keep me posted on your trial experience. I’m sure the people at the Univ. of Rochester will take good care of you, as their reputation precedes them in all that they do for the patient community. I send you my love and my best- Israel

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