Dr. Dorsey Interview
Dr. Dorsey joins JUNIPERunltd's Care Coach, Maura Horton, for another exclusive interview
MagnaReady® founder Maura Horton has once again sat down with Dr. Ray Dorsey, co-author of Ending Parkinson’s Disease: A Prescription For Action, to reflect on the changes to healthcare and Parkinson’s disease since the COVID-19 pandemic first began. In the past year, Dr. Dorsey has launched the Red Letter Campaign along with his co-authors Dr. Todd Sherer, Dr. Michael Okun, and Dr. Bastiaan Bloem. Inspired by the 1938 March of Dimes to End Polio, the campaign was created as a call to action for the community to ban pesticides that have been linked to Parkinson’s disease.
Ms. Horton and Dr. Dorsey also dive deeper into how telemedicine has transformed care in the Parkinson’s community, the latest Parkinson’s research and treatments, and how to know if you have the right physician when seeking a diagnosis.
Maura Horton: The EndingPD.org letter-writing campaign has been out for about a year now. How is that call to action going? Have you seen more conversations about certain substances being banned, like paraquat?
Dr. Ray Dorsey: In October 2020, the EPA reapproved the use of paraquat under new guidelines. Paraquat is a pesticide that's been linked to Parkinson's disease by various researchers around the world in numerous studies. It’s considered the most toxic herbicide ever created. It’s a pesticide that’s applied to weeds, that we then give to animals that give them Parkinson’s disease. It increases the risk of disease in humans by 150 percent or more. 32 countries, including China, have banned it, but the U.S. hasn't. The use of paraquat has increased 20 percent in the most recent year.
So, we need to make our voices heard with this Red Letter campaign. About 15,000 people requested letters or postcards to mail to the White House. We'd love to get to 100,000 by the end of Parkinson's Disease Awareness Month, which is in April. Those who are interested can go to EndingPD.org and email the White House directly. We have language that they can use or modify as they wish. They can also print out the letter to mail or request a postcard. We're also seeking ambassadors that can request 100 postcards to share with their friends and families so that we can reach our goal and make our voices heard.
Horton: The new administration is creating new policies around caregivers. Is there a particular area of these policies that you believe the Parkinson's community could benefit from?
Dorsey: One lesson from COVID-19 is that institutional care has significant limitations. Most older Americans want to live at home, but right now, Medicare has very, very limited home healthcare coverage. One-third of the Medicare budget is allotted to nursing home care. I think there are better ways to deploy those resources. Most people would give up nursing home care if they could get care at home, so we need to make sure that is more accessible. I think telemedicine can be a very powerful way of delivering all types of care from all types of clinicians to patients virtually so that they can live productive lives in their homes.
Horton: Since we last spoke, have there been any new advancements in medications or treatments for Parkinson's? Is there any research that you find promising?
Dorsey: We wrote a postscript to our book since there have been three new medications approved by the FDA for Parkinson's disease. There are incremental advances but still no therapeutic breakthrough on the treatment front. I think the first step is prevention. Our first response is banning certain chemicals such as paraquat. For people who already have the disease, we need to come up with better therapies. I believe that our ability to create better therapies is predicated on our ability to create better measures of Parkinson’s. I think in this day and age, we can do better than having someone tap their thumb and index finger so that a physician can determine something like, “slightly impaired, mildly impaired, or moderately impaired”. While those skills are helpful, I think we can do better by having an objective measure for Parkinson's disease.
Most people would give up nursing home care if they could get care at home, so we need to make sure that is more accessible.
Horton: Do you feel like the research shifts depending upon the age of diagnosis?
Dorsey: Not necessarily. Parkinson's disease is many diseases, and the particular treatment you get depends on the cause and subtype. Some causes are due to pesticides, but many people with Parkinson's disease have had minimal exposure to pesticides other than the fruit that we all consume. For them, it may be purely genetic. There are a few medications that have gene-directed treatments, and there are drugs like LRRK2 inhibitors, which are promising for targeting specific subtypes. Overall, I think we need to get better measurements or get better treatments faster. Secondly, we need to recognize that Parkinson's is multiple different diseases and that the sooner we can subtype those based on genetic, environmental, or biological factors, the sooner we can think about developing treatments that would target those particular subtypes.
Horton: Have you seen any other advancements coming down the pipe through DBS, Medtronics, or other treatments for everyday living?
Dorsey: I think surgical treatments are advancing, especially DBS. Remote programming for deep brain stimulators is likely coming soon. Even though you have to have the surgery done at a major medical center, your future adjustments can be done remotely without having to travel to the center. We’re always looking at the improvements to the battery pack itself as well. There are also new ways of delivering Levodopa that might be easier and more patient-centered. However, we need a substantial increase in our investment to develop more inspiring treatments.
Horton: Do you think there will be a sequel to your book? Do you think there will be a final chapter? What is the end of Parkinson’s?
Dorsey: I think to myself: if we make our voices heard as a community, 15 years from now, could we ban some of the chemicals that are linked to Parkinson's disease? Can we start to see the incidents of Parkinson's disease decrease in parts of the world? Could we have more effective treatments and make a bigger, better difference in the lives of people? Can we make care more accessible so that anyone, anywhere can receive care? I think that's all possible within 15 years, but the status quo won't get us there. We have to make our voices heard.
Horton: What would you say to someone who challenges their diagnosis as far as the different types of Parkinson's go? How far do you think patients should push their medical professionals on their diagnosis?
Dorsey: At first, you push hard. Even the best providers can get it wrong. I think it's less important to be one hundred percent certain with the diagnoses than it is to have a physician who's your advocate. I would ask myself; do I have a physician or clinician who's my advocate and acting in my best interest? Does that clinician know their limitations, and will they get access to other clinicians when needed? Even myself, as a Parkinson's specialist, there are occasions where I can't figure it out and I’ll send the issue to one of my colleagues who knows all of the pathogenetic subtypes of Parkinson’s, or one who works in deep brain stimulation (since I don’t do much work in that area.) You don't need to have the world's most knowledgeable clinician if you have someone who's a good advocate that knows when to bring in additional help.
The above Q&A is edited for length from their original conversation.