The Parkinson’s Disease Pandemic is man-made, and these are the current efforts to end it.

In this episode of Bite the Orange, Manny is glad to interview Ray Dorsey about Parkinson’s disease, how to improve its treatment, and how to mitigate its extent, based on his work as a professor of neurology and director of the Center for Health and Technology at the University of Rochester Medical Center. Parkinson's is the world's fastest-growing brain disease, and its increasing worldwide reach over the last 200 years is directly linked to air pollution, certain pesticides like Paraquat, and industrial chemicals. Ray also shares how he has been a strong advocate for telemedicine for over a decade and believes that, combined with smart remote patient monitoring devices, more Parkinson’s patients could receive better care wherever they may be.

Please tune in to learn more about Parkinson’s disease and what can be done to mitigate it!

FULL EPISODE

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Emmanuel Fombu:
Welcome to Bite the Orange. Through our conversations, we create a roadmap for the future of health with the most impactful leaders in the space. This is your host, Dr. Manny Fombu. Let's make the future of healthcare a reality together.

Emmanuel Fombu:
Good morning, good afternoon, good evening, good night. Wherever you are, dear listeners. Thank you and welcome to another episode of Bite the Orange. And today we have a rock star clinician, someone that I respect a lot, and we'll be talking to him today. This person is no other than Dr. Ray Dorsey. I never read the bio of anyone on this particular show, but in this particular case, I have to do this, right? So Dr. Ray Dorsey, right, is a professor of neurology and director of the Center for Health and Technology at the University of Rochester Medical Center. Dr. Dorsey is helping investigate new treatments for the movement disorders and improve the way care is delivered for individuals with Parkinson's disease and other neurological disorders. Using web-based video conferencing, he and his colleagues are seeking to provide care to individuals with Parkinson's and neurological diseases anywhere that they live. That's the only reason why I wanted to read your bio specifically, right, because you're the only clinician I've seen that democratizes healthcare to say no matter where you live, you can actually do that, which fits perfectly into that model of Bite the Orange. With that being said, Dr. Dorsey, please, can you tell us welcome to the show and please tell us something about yourself?

Ray Dorsey:
Thanks very much, Emmanuel. Delighted to be with you. Delighted to be with an entrepreneur who's relentless like you are, it's a, really a pleasure and honor. And, you know, our vision is that anyone, anywhere can receive care and that anyone, anywhere can participate in research. And historically, the care we received and optimize for research or dictated technology that we use every day, including what we're doing right now.

Emmanuel Fombu:
So with that being said, tell us about yourself, because you have a very interesting background from where you've been from Stanford to UPenn to MD, MBA, to tell us about yourself. Who is Dr. Dorsey?

Ray Dorsey:
I'm a neurologist at the University of Rochester. I guess the atypical part is I went to business school at Penn, ready to join the MBA. I think you did the same thing there, Dr. Fombu, and I worked for McKinsey, a consulting firm, for a couple of years in between medical school, and then decided with advice from one of my mentors at Penn, he said, If you're not passionate about what you're doing, you should come back to do a residency. You won't feel complete unless you do, you won't feel complete unless you do, and he was right. And so I bit the orange and I went through the minutes of residency, gave up a little bit of money and gave up and put a little more sweat in and blood and maybe even a couple of tears, and I came out as a neurologist and hopefully a better person for the experience. So hopefully some sweetness at the end.

Emmanuel Fombu:
That's right. So thank you very much for that, and that's why I'm very happy to have you on the show. When the show came about, you were one of the top guests I wanted to talk to, right? Because I think you believe in this in the movement and you're living your life through it. And so I want to start by discussing Parkinson's disease specifically. You're a top expert in this space. Your book, I mean, I have it right here. It's one of the books, the reviews on Amazon are incredible, right? And the book is A Prescription for Action, Ending Parkinson's Disease. We talked about this in the past, and there are certain things that you learned across this journey. So when we talk about Parkinson's disease, can you please describe to the audience what Parkinson's is?

Ray Dorsey:
Yeah, so Parkinson's is the world's fastest-growing brain disease, even faster than Alzheimer's, classically associated with tremor, usually in the hand, usually a rest tremor, slowness and movement, stiffness, and difficulties with walking or balance. Some very prominent people have had Parkinson's disease. Muhammad Ali had it, Michael J. Fox, Robin Williams had a Parkinsonian disorder, David Spinney, Brian Grant, and many others. Unfortunately, 200 Americans will be diagnosed with the condition today and another 100 will actually die from the condition, that's now the 14th leading cause of death in the United States.

Emmanuel Fombu:
And I know you mentioned some of these famous names. We're seeing someone like Muhammad Ali, right? Very powerful fighter, I watched him and like what happened to him. Michael J. Fox, another person, I know his foundation is pretty big in research around Parkinson's disease. But in your book, I know the very first chapter you talk about six men in London, the discovery of a new disease, and its causes. Can you tell us that story and the origin of Parkinson's?

Ray Dorsey:
So Dr. James Parkinson was a 61-year-old surgeon in London who'd been practicing medicine for 30 years when he noticed something new, something novel on the streets of London, and that he started seeing people walk with the stooped posture, a little bit of tremor and a shuffling gait, and he said he actually only examined three of these individuals, the other three, he just observed, walking on the streets. And he said, this is a new disease. He called it the shaking palsy with later being named after him by a French neurologist about 50 years later. And he said, this has not been classified in the medical literature before. So he's describing something new and novel, and he writes a case series of six individuals. 200 years later, the global burden of disease identifies Parkinson's as the world's fastest-growing brain disease and estimates that there's at least 6 million people with the disease. So in a span of 200 years, we went from something affecting six individuals to something affecting over 6 million. We argue in the book that the reason that happened isn't because of genetics. Genetics don't change that much in 200 years, it has to be environmental factors. And if you think about it, he's writing in London in 1817. What's going on in London, 1817, is the height of the Industrial Revolution. London is the capital, and since that time, numerous factors and products and byproducts of the industrial revolution, including air pollution, a huge issue in England. Certain pesticides and industrial chemicals have been linked to Parkinson's disease.

Emmanuel Fombu:
Which is interesting because you actually make a very bold, you and your coauthors make a bold statement and actually call this a manmade pandemic, right? Which is quite interesting, especially coming through like the whole pandemic we've gone through the last couple of years, and this particular case is a clear evidence of man-made from your research. So tell us about that.

Ray Dorsey:
Yeah, so now every time I see someone with Parkinson's, I get pissed off because I think it's preventable. And so, like, the poster child for man-made disease is lung cancer. So if you look at lung cancer deaths in the United States 100 years ago, there were essentially none because lung cancer didn't exist in the United States, it was considered a once-in-a-lifetime oddity. All the doctors and medical students would gather around thinking they would never see another case of lung cancer. Unfortunately, they were wrong because 25 years after cigarettes were introduced in the United States and the early 1900s, we saw a corresponding increase in the rise of lung cancer. And when smoking peaked in the 1970s, we then saw a decline in the number of cases of lung cancer. So that's your poster child, is lung cancer is a manmade disease, and I think Parkinson's is the same. There's a wonderful neurologist named Dr. Caroline Tanner at UC San Francisco who, the past 20 years has done a series of studies demonstrating that the vast majority of Parkinson's is due to environmental factors through twin studies, as demonstrated that certain pesticides ones, including that we can continue to use, including one called Paraquat, is associated with 150% increased risk of Parkinson's disease, and then a very common industrial chemical that used to be used at decaffeinated coffee, degrees metal parts, and dry clean clothes is associated with a 500% increased risk of Parkinson's disease. And I think those three factors air pollution, certain pesticides, and industrial chemicals underline the best, underlie the vast majority of people who have Parkinson's disease, certainly in the US and likely around the world.

Emmanuel Fombu:
Is there anything being done about this? Because I know this big thing you advocate for, which is ending Parkinson's disease ... as you propose the pact, right, the bold pact, and so tell us about the pact.

Ray Dorsey:
So the pact, the brainchild of one of the co-authors, Dr. Michael Okun, and it's the one, first of all, prevent the disease, second, advocate for additional resources for it, three, care for anyone with the disease, regardless of who they are or where they live, and four, to treat the disease with novel therapy, most effective treatment for Parkinson's disease is 50 years old. We had more therapeutic breakthroughs for the disease last century than we had this century. But the first element is preventing the disease, and we're still using a pesticide called paraquat. It's considered the most toxic herbicide ever created. It kills the weeds that Roundup doesn't. It's been used to commit homicide and suicide, and the EPA's own website says once it can kill. Over 30 countries, including China, have banned the chemical, but the United States just last year re-authorized its use and use of this chemical, which is found, you know, in upstate New York, it's found in California, it's found in New York, it's found throughout the country, has doubled in the last five years. So 30 countries have sought to ban this chemical, including China, but the United States has not only continued to permit its use, but has continued to permit its increasing use. And every time it's sprayed, I think we lay the seeds of future cases of Parkinson's disease.

Emmanuel Fombu:
Is there any kind of policy work happening around this? Is something that someone listening right now advocating for this that supports the mission that you're on and wants to bite the orange and join us on this mission to make this happen?

Ray Dorsey:
So it's not being sprayed with pesticides. So the Michael J. Fox Foundation and others have sued to try to prevent the reauthorization of Paraquat. Recently, a bill was just introduced into Congress to create a national action plan to end Parkinson's disease. There's 25 Congresswomen and men who signed on to be co-sponsors of that bill and which was just introduced into the Senate. So if you want to contact your representative or senator and tell them to get behind this bill, which would direct the federal government to create a national action plan that would want to prevent, and two, bring about the end of this very likely preventable disease. That's something that people can do. Finally, if you're really fired up, you can join The PD Avengers, a global grassroots organization formed by people with the disease for their benefit, and go to PDAvengers.com and join the fight. And then one last plug, if you can, if you want to buy our book, fantastic. All the authors are donating their proceeds to efforts to end Parkinson's. You can buy it on Amazon, it's called Ending Parkinson's Disease, and if you can't afford one, we'll send you one for free. Just email me at info@EndingPD.org. Info@EndingPD.org.

Emmanuel Fombu:
And all this information, we're going to actually have it tagged under the podcast on the website as well so everyone can have it, know the best ways to contact you, and I'm personally going to join PD Avengers, because it's Avengers, correct?

Ray Dorsey:
Yes, it's got 5000 men, formed a year ago, it's got 5000 members from 70 different countries throughout the world.

Emmanuel Fombu:
And that's quite interesting, as you mentioned, a packed piece of this. And I think this is, the key part, which is care for patients, and you mentioned regardless of where they are, right, and then the next piece on the T-side is the treatment of the clinician using innovative therapies or innovative ways of engaging the patient. So when I had a conversation with you, I think last year, there's something interesting I found out and that was, How long have you been practicing telemedicine? Because I went back and did some research and I found that you had published papers in 2018. I actually looked at telemedicine and its use, right?

Ray Dorsey:
We started in 2007. I was, I think, probably still a fellow in this nursing home in upstate New York, in this town of New York, for New York population, 20,000. Nursing homes tend to be located in more suburban or rural areas where land is cheap, and they had 250 residents and they estimated that 50 of their residents had Parkinson's disease and there was no neurologist to care for them. So they, the guy, Tony Joseph, called me and said, Would you be willing to see patients via telemedicine? And I said, my father had done telemedicine for psychiatry, so I was at least familiar with it in 2007, and I said, Sure. And that sent us on a long journey that we've cared for, I think to over 2000 individuals in five different states and 20 different countries on six different continents, and really basically since 2013 have only been seeing patients via telemedicine. I really haven't set foot in a traditional clinic since 2013.

Emmanuel Fombu:
That is quite interesting. And your paper they published, I think it's 2018 paper called Telemedicine for Parkinson's Disease, Limited Engagement Between Local Clinicians and Remote Specialists. That was actually a very interesting paper because you were looking at when you refer patients to a specialist, for example, right? Do the specialists actually follow on with what was recommended? You've mentioned seeing patients across state lines, across national boundaries. So what have you learned during that process of it, right? So when you recommend something, someone follows, how does that work with prescriptions and others?

Ray Dorsey:
So there's a great, there was a great McKinsey report that said something said, I think the headline was Patients Love Telemedicine, Physicians Not So Sure. And if you think about it, what is telemedicine doing? It's bringing care to patients instead of patients to care. It's kind of odd that you and I are clinicians and we're generally healthy, we don't have Parkinson's disease, we don't have multiple sclerosis, we don't have ALS. Why aren't healthy clinicians seeing patients on their terms instead of sick patients having to come see generally healthy clinicians on our terms? And I think, you know, it used to be the house call in the 1930s, 40% of physician-patient encounters occurred in the home, and I think this is just the next generation of the house call which is bringing it, care, to the home. You know, in the future, you know, you'll just do it off your smartphone and a lot of the gains go to patients, you know, they don't have to travel, they don't have to sit in the waiting room, they don't have to find someone to give them a ride in. The benefits don't accrue so much to clinicians, so I think there are some benefits to be had for clinicians as well, and so I think you've seen every telemedicine study that I think I've ever seen it's reported high patient satisfaction. But until COVID, the vast majority of clinicians were really reluctant to change their way, even though patients were thirsting for a new way to receive care.

Emmanuel Fombu:
But why is that? I mean, that's becomes the biggest challenge here, right? And that's the whole point behind it. So clearly, you are not homeless. Clearly, you still work, clearly, make some money, and clearly, you're surviving because most clinicians in general, even today, even post-COVID people, get questions like, do you think telemedicine is here to stay? Is it a temporary thing? You've been doing this for a long period of time, right? So do you see an uptick during the COVID pandemic or before? What do you think this resistance and change comes from?

Ray Dorsey:
I think people are really resistant to change. You know, in fairness, Medicare didn't cover it in the United States except very limited circumstances. They temporarily expanded that, which enabled a 100-fold, 100-fold increase in telemedicine in four weeks, a 100-fold increase change in the way we deliver care, and the industry does not change very much in four weeks. Among older adults, it just tells you what the latent demand is for this care model, it's huge. Vast majority of people don't hang out in New York City or in Rochester, New York. They live in Omaha, they live in Springfield, or they live in Corning or they live in New Hartford, New York, and they can't access care. I just got an email just right before coming on here, someone was talking about I think in Georgia, they have a Parkinson's specialist for the whole region and they get all these Vietnam veterans who got exposed to Agent Orange and now have Parkinson's disease. I just think change is really, reluctant people are very comfortable with the status quo, and until we had a forcing mechanism, I think it's a really important thing that this is a forcing mechanism, there was no other alternative that led to the adoption. Left to their own devices, I think major medical centers would like to go back to the status quo because it made a lot of money. They got paid more for patients to come see us in clinic because they get a facility fee. And if you think about it, for a doctor, or if you just have a waiting room, a holding cell, there's no real, they're not paying the cost of ... They're not having to schedule time off from work. It's really all oriented to produce that, the industrial model, which I don't think has served us well, and I think COVID has really demonstrated the substantial shortcomings in American healthcare system. I mean, think about it, we spend 40% more per person than any other country in the world, and we have more deaths than any other place in the world. And you can just see major medical centers, whether it's Harvard or Mayo Clinic or Cleveland Clinic, are losing money. And at a time of greatest healthcare need that our health system is losing money. It just really, really should give us pause and make us rethink the way we deliver healthcare in the United States.

Emmanuel Fombu:
Which is actually very interesting as well, because you read many headlines, you see layoffs at hospitals, right? It's a massive thing that's happening, correct, right? And you say hell, it's a massive healthcare need. You had all the heroes during the pandemic that were stepping up front, now all of a sudden they're getting laid off from this, correct? I mean, that's something that.

Ray Dorsey:
They were rewarded financially. You saw all CEOs making seven and eight-figure salaries and furloughing nurses and nurse practitioners in infectious diseases. I think there was just some gross inequities in the system. And I think, quite frankly, the system is not designed well. You know, what we should have been doing is caring for everyone for COVID in the home, right? They should never have come into the hospital. We should have kept the hospitals COVID-free and kept everyone at home, give them a pulse oximeter and, you know, vital signs monitoring and, you know, done telemedicine and cared for patients all in the home without bringing them into the hospital, spreading the disease to other patients, spreading the disease to other healthcare workers, something that's not discussed at all. We know infectious disease is spread in the hospital. We know C diff, you know, spreads in the hospital. To think that we weren't going to spread COVID in the hospital is just, I think, crazy.

Emmanuel Fombu:
Correct, and so even with that, COVID, people go into hospitals that increase risk of, you know, like C diff, like you mentioned, right, that happens in hospitals. So add COVID to that, it became worse. And then, moreover, people were dying in hospitals without even seeing family members, right, because ...

Ray Dorsey:
Seeing family members, it's one of the most unsafe places in the world, are hospitals, and we knew that before COVID, and I think with COVID it's even more.

Emmanuel Fombu:
And I like the idea you brought up, the next topic that I'd like to jump into about the next phase of what telemedicine is becoming, right, and this idea of remote patient monitoring. You've been doing this. Have you used any kind of cool devices, you know, as a specialist to monitor your patients in between these visits? I think that's another space in which I think telemedicine is going to evolve into, right? The devices they used to measure.

Ray Dorsey:
I think the future of healthcare is that these devices, you know, a smartphone, smartwatch are going to be platforms for one measuring health, and then, second, platforms by which healthcare is delivered. So these devices, smartphone, smartwatch, whatever it is, could even be your clothes, will, one, measure your health in new novel ways. They'll identify, for example, when you have atrial fibrillation before your clinician or you will know. And second, you'll be connected to see clinicians based on your health status through this device. And if you think about it, right now, all healthcare is done at the clinic, and so you're going for your annual visit, you get your blood pressure measured, you get your cholesterol measured, and based on that one episodic reporting, you get determined whether you get put on antihypertensive medicine or not, which on the face of it, seems absurd. And, but all care is measured in a clinic and all care is delivered in the clinic, and I think these devices are going to let us transition away from that. And there are huge ..., I mean, you know better than I do that these devices are really, really common throughout the rest of the world, and physicians are really, really, really scarce throughout much of the world. And so that, you know, this could be an incredibly powerful platform for measuring atrial fibrillation, for measuring epilepsy, for measuring Parkinson's disease, for measuring COVID, and a great way to deliver care to patients who happen not to be located near a clinical setting.

Emmanuel Fombu:
And that is that's quite innovative, and I think that's where things are going. So do you see let's go back to Rochester, right? You have an innovation center. So tell me how that works. Is it part of a university? Like how is that center set up?

Ray Dorsey:
So I was forced in to take over from some great mentors and we created the Center for Health and Technology with a vision of enabling anyone anywhere to participate in research and to receive care, and our mission was to do the unprecedented to do what's not been done before. A year ago, I stepped down and we have a great new director, Dr. Chad Heatwole, who is now directing it. And we've done things with these smartphones to measure Parkinson's disease and then recently with colleagues at MIT and a paper that just came out yesterday in Science Translational Medicine, we showed that a radio wave sensor put into somebody's home can monitor people's Parkinson's disease. It can measure how fast they walk at home. They can measure how fast they walk through doorways when they walk slower because people with Parkinson's have trouble with narrow corridors. We can see improvements in their gait speed in response to medication. We showed that with objective measurement of the disease in the real world, we can decrease the number of people that are necessary to be studied in future clinical trials by a factor of ten. In a study published in Nature Medicine about a month ago, Dr. Khattab and her team demonstrated that just passive monitoring of people's breathing at night can identify individuals with Parkinson's disease even before they are diagnosed by a clinician. So I think we're seeing in this case, a home monitoring device in two studies, one in Nature medicine, one in Science Translational Medicine, giving us objective, sensitive measures of disease that previously would be inconceivable to obtain. I think this is just a marker of what the future holds. If you can do this a home monitoring device, what can you do with the shirt? What can you do with a car? What can you do with a smartphone? What can you do with a smartwatch? And I think the future is, we're just beginning to tap the potential of what the future is going to offer in terms of monitoring and hopefully in the future delivering healthcare.

Emmanuel Fombu:
This is quite fascinating, Dr. Dorsey, and it's great having you on the show. I think if you're a listener, if you're like me, you should be very pissed off right now about Parkinson's disease, this man-made pandemic. We have the links and ways to support Dr. Dorsey on this journey and his movement and all the patients that have Parkinson's disease. And so if you believe in what you just heard today and want to support Dr. Dorsey, please take a bite of the orange, #BitetheOrange. I'm sure we will do #Parkinson'sDisease as well. Dr. Dorsey, thank you for joining us on the show, and I would love to have you on again.

Ray Dorsey:
Any time, Emmanuel, and thanks for all that you do for the community and for many of us in the field, it's people like you who help change the world. Delighted to be joining you on your fantastic journey and looking forward to my next orange.

Emmanuel Fombu:
Thank you very much.

Emmanuel Fombu:
Thank you for listening to Bite the Orange. If you want to change healthcare with us, please contact us at info@EmmanuelFombu.com, or you can visit us at EmmanuelFombu.com or BiteTheOrange.com. If you liked this episode and want more information about us, you could also visit us at EmmanuelFombu.com.

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About Ray Dorsey:

Dr. Ray Dorsey is a professor of neurology and director of the Center for Health and Technology at the University of Rochester Medical Center. He is a nationally recognized pioneer, practitioner, and leader in digital health and telemedicine. Dr. Dorsey is helping investigate new treatments for movement disorders and improving the way care is delivered for individuals with Parkinson's disease and other neurological disorders using web-based video conferencing. He and his colleagues are seeking to provide care to individuals with Parkinson's and other neurological diseases wherever they live. Along with Todd Sherer and Michael S. Okun, he recently wrote the book Ending Parkinson's Disease: A Prescription for Action.

Things You’ll Learn:

Parkinson's is the world's fastest-growing brain disease and is classically associated with hand tremors, slowness in movement, stiffness, and difficulties with walking or balance.
Parkinson’s disease is the 14th leading cause of death in the United States, as 200 Americans will be diagnosed with it, and another 100 will die from it today.
Dr. James Parkinson, a 61-year-old surgeon, noticed what he called The Shaking Palsy on the streets of London.
50 years later, the disease would be renamed after him.
In 200 years, Parkinson’s went from affecting six individuals to over 6 million.
Paraquat is a common industrial chemical associated with a 150% increased risk of Parkinson's disease.
Over 30 countries have banned it, but the United States re-authorized its use last year.
A bill was recently introduced in the US Congress to create a national action plan to end Parkinson's disease.
The PD Avengers is a global grassroots organization formed by people with Parkinson’s disease to advocate for those affected.
The PD Avengers formed about a year ago and currently has more than 5000 members from 70 countries.

Resources:

Connect with and follow Ray Dorsey on LinkedIn.
Follow the University of Rochester Medical Center on LinkedIn.
Discover the University of Rochester Medical Center Website.
Visit the PD Avengers Website here!
Get your copy of the book Ending Parkinson's Disease: A Prescription for Action here!
If you can’t afford a copy of the book, email Ray Dorsey at info@EndingPD.org to get one.
Read the paper Telemedicine for Parkinson's Disease: Limited Engagement Between Local Clinicians and Remote Specialists here.