A few years ago, when I was making a film about dance and Parkinson’s for PBS called Capturing Grace, I was struck by something as I watched people walking into the Dance for PD class in Brooklyn. And that’s that everyone who has Parkinson’s has something go missing. It might be the steadiness of our hands or our sureness of step. It might be the swing of an arm that goes missing, or it might be our smile. But Parkinson’s claims them one by one.  It made me realize that Parkinson’s is fundamentally a disease of subtraction. It takes things from you and then it takes something more. But what the remarkable individuals I got to know while making that film taught me is that if you’re going to contend with a disease of subtraction, you sure as hell better believe in the power of addition. They taught me that you have to keep adding to your life if you’re going to stay on the plus side of the ledger. Maybe it’s joining a dance class or an exercise group, maybe it’s attending a patient education conference or engaging in political advocacy. Maybe it’s joining a clinical trial. But you have to act with the belief that the plus sign is more powerful than the minus. And that central truth forms the common denominator that’s shared by everyone I know who lives well with Parkinson’s disease: the ability to seize the opportunity for addition when faced with power of subtraction.

But that truth points to a central challenge that confronts the Parkinson’s community. And that’s that not everyone has an equal opportunity to add to their life with Parkinson’s. It’s a problem that involves who we are, because right now the whole of who we are doesn’t equal the sum of all our parts. To make another film reference, it’s a problem of hidden figures. And we have to solve this problem if we’re going to make real our dream of a world without Parkinson’s for everyone.   

Let’s begin by thinking about who’s missing at any Parkinson’s conference any of us have ever attended. For starters, it’s rarely a diverse group. I’ve attended well over 50 Parkinson’s conferences in the past ten years and never once has a gathering matched the demographics of the disease. In fact, if you based your demographic assessment of the disease by who attends conferences or exercise classes, you’d assume that Parkinson’s is a condition that almost uniformly affects upper middle class white people rather than it being the equal opportunity disease we know it to be. Parkinson’s cuts across every racial and ethnic line, but when we gather people together, the scientific and patient communities are generally white on white.  And we’re usually short on economic diversity too.

What’s more, I suspect that the patients we see at conferences and exercise classes are the same folks who participate in clinical trials, attend support groups and advocate for better health care policy. In other words, the Parkinson’s community is like the tip of the proverbial iceberg. We’re visible, we’re small and we’re white. But we don’t exactly represent the whole of who we are. And I don’t think we can create a true world without Parkinson’s unless we navigate a more inclusive course.  

Consider the question of clinical trials. According to a recent Harris poll, only 25 percent of all Parkinson’s patients have participated in clinical trials. Meanwhile most clinical trials face delays and many are outright cancelled because of problems with patient recruitment. Plus this means that potentially we keep testing out new treatments on a small, unrepresentative slice of the overall Parkinson’s population. And that’s a big problem, given a disease as varied and idiosyncratic as Parkinson’s, one that increasingly seems to require a precision medicine approach to solve. Sometimes I wonder if one of the limits to our progress is that we’re just collecting the same DNA, the same blood samples, and the same UPDRS and questionnaire results over and over again from that hyper engaged percentage of the Parkinson’s community.

According to an article in Parkinsonism and Related Disorders, only 17% of clinical trials in Parkinson’s disease even collect demographic data. And in those cases, only 8% of participants were non-white (And that number is considered generous by some). (1)So while we don’t have great data on the demographics of Parkinson’s disease, I think we can safely say that it’s not a 92% white disease. And I don’t think we can solve this problem when so much data, so many clues, are missing.

And if lack of inclusivity is limiting our search for a cure, we know for a fact that it’s limiting the quality of our care.  And how much we focus on care is in many ways as important as how much we focus on cure. Because let’s face it, even if we figure how to significantly slow down disease progression in the next two decades, the disease itself will still be with us. And how well we live that disease is still an unequal proposition. 

Consider the fact that according to a study assessing treatment disparities in Pennsylvania, African Americans were “4 four times less likely to receive any PD treatment, especially indicated medications.”  (2) And in a new study published in Neurology, Africans Americans were 30-percent less likely and Hispanics 40% less likely than whites, to see a neurologist in an office visit situation. And perhaps most stunning, between 2002 and 2009, 18,312 patients were discharged from non-federal hospitals after a DBS procedure. Of those 18,312 … 120 were African American. That’s less 0.1%.  

So what can we do? Well if addition is going to defeat subtraction, these figures have to change. And they have to change within both the scientific community and within patient organizations.

African Americans and Hispanics represent 30 percent of this country’s population. Yet according to the National Science Foundation only 2.5% of those working in the Life Sciences are African American, and just 5.9% are Hispanic. Similarly only 4.5% of those involved in diagnosing and treating patients are African American, 7.5% are Hispanic.  It stands to reason that a more diverse body of scientists would not only expand the range of our research but also help attract a more a more diverse group of patient participants. 

Let me reference one last challenge that I think impacts the breadth and shape of who we are as a community. I think we have to encourage everyone living with Parkinson’s to actually identify with our disease. Understandably that’s often the last thing many of us want to do. We don’t want to be defined by our disease.  How often do we hear people say “Parkinson’s is not who I am, thank you very much. I’m a journalist or a teacher, I’m a husband or a wife. Parkinson’s doesn’t define who I am.” It’s a totally understandable and often useful point of view. But my argument is. Well yes, actually, it does. Of course Parkinson’s doesn’t define all of who we are, but it is life defining.  Parkinson’s is, in fact, central to our life experience, no matter our skin color, no matter our economic status. Our challenge is to make sure that all people with Parkinson’s have an equal opportunity to embrace that identity and are able to say, “I have Parkinson’s, but I can add to my life. And in so doing I have the opportunity to help create a world without Parkinson’s for everyone”.

To achieve that goal, we have to work hard at every level. We have to make our patient organizations more inclusive and our research labs more diverse. We need to do everything we can to encourage more diverse clinical trial participation and we need to keep asking ourselves two questions. First, who’s missing? And second, what we can each do to keep adding to our community so that in the end, addition can indeed be powerful enough to defeat a disease of subtraction. 

References:

1.) Minority Enrollment in Parkinson's Disease Clinical Trials, Parkinsonism and Related Disorders, May 2009

2.) Annals of Neurology, August 2009

3.) Racial Disparity in Neurological Health Care Access, Neurology, May 2017

4.) JAMA Neurology, March 2014

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Dave Iverson co-hosted the Portland Countdown Podcast for the 4th World Parkinson Congress. He is an independent film producer, veteran journalist, and now serves as Contributing Editor for the Michael J. Fox Foundation for Parkinson's Research and is a founding member of the foundation's patient center.

Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®