Parkinson's Disease in 2021: What are the action items?
In March 2020 just as the reality of the COVID-19 pandemic was setting in, Drs Ray Dorsey, Todd Sherer, Michael Okun and Bas Bloem released their book, Ending Parkinson’s Disease: A Prescription for Action. As we enter 2021 I sat down with my parkinsonsecrets.com co-editor to ask him what are the action items and where he is driven to spend his efforts for the Parkinson’s cause in 2021. Mike has his finger on the pulse of what matters to patients and caregivers so it is always very inspiring to chat with him! Hopefully this conversation will inspire our readers as well to make a change even if it is at a local or personal level. All of us working together around the world, can propel the change that needs to happen to make a real difference! Indu Subramanian
Dr. Indu Subramanian is co-editor of Parkinsonsecrets.com
Q1. What were you most struck by in 2020?
2020 was such an unprecedented year on so many levels. I was struck by how quickly the world aligned and how people came together to meet the COVID-19 challenge. I was struck by how the global scientific community organized in a targeted effort — what they accomplished in such a short period of time was nothing short of amazing.
I recently summarized the COVID scientific timeline to date in a recent op-ed in the Daily Beast:
“On Dec. 1, 2019, the first case of human COVID-19 was documented. Less than six weeks later, the genetic sequence was unlocked by the National Institutes of Health (NIH) for the SARS-Co-V-2 virus. Within five days, a mRNA vaccine was in development. As we pass one year since the first COVID-19 case, several vaccines have been readied for human use and three former U.S. presidents will roll up their sleeves to be publicly vaccinated.”
“The speed of this scientific achievement will be recorded in history as one of the most rapid, impactful, and critically important medical advances of our generation—and likely of generations to come. Millions of people will never suffer the acute or lingering effects inflicted by SARS-Co-V-2. Hundreds of thousands more will be spared death. The positive impact on this generation and on future generations will be so large that it will be impossible to measure.”
Dr. Ray Dorsey, co-author of the book, Ending Parkinson’s Disease: A Prescription to Action
Q2. What is your goal for 2021 advocacy in
Parkinson’s?
“Though I have been encouraged by the progress during the pandemic, there are other diseases that, if left unchecked, will cause worse devastation than SARS-Co-V-2. Frustratingly, we may be doomed to wait until world economies and health-care systems are pushed to near collapse. One such disease is Parkinson’s.”
What if we sped up our efforts in advocacy and funding? I hope to spark the activism around raising awareness for PD this year by using the COVID model of collaboration, empowerment and dissemination. We need to move from 200 million dollars in NIH funding to 2 billion a year in NIH funding. I think a great goal for 2021 is doubling the NIH budget to 400 million for Parkinson’s. Though it is not 2 billion dollars it would be a great first step. Since Parkinson Disease is predicted to double in the next 20 years and has doubled in the last 40 years, it is a very reasonable ask to have double the budget.
Dr. Bastiaan Bloem, co-author of the book, Ending Parkinson’s Disease: A Prescription to Action
Q3. What are some examples of success stories in
the history that we can learn from in the Parkinson
community?
There are two excellent examples in medical history of choosing to sprint toward the finish line to address devastating diseases.
The first is polio.
The formation of the National Foundation for Infantile Paralysis in 1954 raised more money than the American Cancer Society, the American Heart Association, and the National Tuberculosis Association combined. They enlisted A list celebrities and people mailed dimes to the White House. This is a great example of what to shoot for in a plan for successful disease advocacy.
The second example is HIV.
Advocates occupied the FDA building.
They championed and connected quilts on the National Mall.
They placed a larger-than-life-sized condom on Senator Jesse Helm’s house.
They advocated NIH in an aggressive manner for more funding.
The net result was $3 billion a year in funding.
The trajectory of HIV changed dramatically and positively as a result of these collective efforts.
Q4. What is the funding situation for Parkinson’s
disease versus other disease states?
Parkinson’s disease received an estimated $201 million in NIH funding (2019).
HIV receives $3 billion dollars a year.
COVID-19 has so far received $3.6 billion a year (only one year old).
We need more funding in PD!
Q5. Can Parkinson disease treatments learn from the
research generated by the COVID-19 Pandemic?
This is an area I am very excited about. The answer is YES.
Both Parkinson’s disease and COVID-19 have led to development of monoclonal antibodies and vaccines. There are a lot of things both groups can share and learn.
The early loss of smell in COVID-19 and in Parkinson’s has generated a lot of interest in both sets of researchers….could it be a clue to pathogenesis?
Both Parkinson’s disease and COVID-19 are struggling to develop reliable diagnostic tests and tests that will track disease progression.
Treatments for COVID-19 “long-haulers” may give us clues about treatment of non-motor Parkinson’s symptoms.
As we develop new drug targets, novel neuromodulatory devices, gene therapies, optogenetics, and other out of the box approaches to Parkinson’s disease it would be foolish to not fully embrace and learn from the COVID-19 experience.
To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonBedside and https://www.tourettetreatment.com/
He also serves as the Medical Director for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.