The US Parkinson’s Community: A Personal Assessment of the Impact of Two Decades of Change
If I had tried to imagine, back in 1996 when I arrived at the Parkinson’s Disease Foundation (PDF), what might be my parting commentary on the Parkinson’s disease community at the time of my retirement 20-odd years later, I would have had no hesitation answering. It would have been hailing our discovery of the cause of PD, and the development of decisive treatments for it. And I would not have been alone in coming to this cheery prophecy. At least one very distinguished director of the Neurology Institute at NIH, when asked, back in 1999, to predict the date for a PD cure at a hearing of a U.S. Senate Committee, he blithely answered: “In 10 years – maybe even five.”
This was not to be. After a flurry of releases of new PD therapies in the late 1990s, the annual rate of new PD treatments has slowed, and the volume of industry investments in therapies to ease diseases of the central nervous system as a whole has dropped by half. Moreover, such treatments as have been approved by the U.S. regulatory authorities have mostly addressed a single PD symptom (e.g., difficulty in rising from a chair, and certain cognitive difficulties) and have not been game-changers by any measure.
So we are not there yet, and most scientists believe that we will not be there for years, even decades, from now. But the signs of progress are many, and it is these that are the focus of my valedictory message to the world PD community.
More Able and More Effective Leadership
First, I point to how the leadership of our community has improved over the years. Twenty years ago, in the USA, we had three major national organizations, a freestanding Washington-based organization focused on policy, and an uneven collection of regional and local organizations. This random and often chaotic pattern meant that some areas of the country were very well served, but many were not served at all. The national organizations were in general thinly staffed, poorly led and prone to squabbles – some of them deeply destructive. (My favorite example of this what happened in late 1996 while Congress was putting in place the Morris K. Udall Act for Parkinson’s Research. On one single day that Fall, the Senate employee who had been designated to help mobilize the community in support of the Udall bill was visited by representatives of the three organizations, each one pushing for competing versions of the bill.)
Two decades later, this picture has changed almost beyond recognition.
One example of this is the improved leadership structure of our community --– including the emergence, in 2001, of a new and effective national organization named for its co-founder, the gifted actor Michael J. Fox, and the recent merger of my own organization, the Parkinson’s Disease Foundation, with the National Parkinson Foundation to create the Parkinson’s Foundation.
Another is the greatly enhanced caliber of the professional staff (and governing boards) among the national and regional organizations – a far cry from the earnest but mostly inadequate staff that labored in the same vineyards two decades ago.
Third, we now have a new generation of professional organizations focused on specific challenges and opportunities –- such as the World Parkinson Coalition, which organizes a major international World Parkinson Congresses every three years, and the Parkinson’s Study Group, created by Drs. Stanley Fahn and Ira Shoulson, legendary leaders of our community, which provides a forum for the more than 100 organizations that run clinical trials for Parkinson’s meds.
We are in a different and far more effective world.
Stronger Engagement of Patients in the Work of the Community
When I arrived at PDF in 1996, the focus of public attention in the PD community tended to be on doctors and scientists who do the research and provide the care, and increasingly on the role of government in advancing the field as a whole. The role of patients was much less visible, except as potential participants in clinical trials and as financial supporters of organizations like my own.
Today, the scene is markedly different. Patients – now called, more appropriately, “people with Parkinson’s” –- are front and center of many discussions. This is especially true at the newly-merged Parkinson’s Foundation, where the graduates of our Parkinson’s Advocates in Research program go on to take critical roles in the PD community. Assignments include positions as advisors to drug companies, as members of panels at the US Food and Drug Administration, as leaders of community-based support groups and even as members of our Scientific Advisory Committee.
Patients, once the passive objects of our programs, have moved to roles as active leaders of our communities, to the benefit of all of us.
Wider Public Visibility of Parkinson’s Disease as a National Issue
Weeks after taking up my position at the PDF in 1996, I had a conversation with one of our Board members who had recently moved to South Florida. She told me how discouraged and embarrassed she felt when she was shepherding her husband, whose PD rendered his gait awkward, through the streets of Naples. People would avoid them; one, a policeman, even asked whether he had been drinking.
Two decades later, while it may still happen, such incidents are much rarer. The appearance on television and other news media of celebrities like Michael J. Fox, the late U.S. Attorney-General Janet Reno, and the late Muhammad Ali, have personally and powerfully brought PD before a national audience, and the ensuing increase in public attention through television and other news media has transformed public understanding of the disease, and fuelled public commitment to doing something about it.
Our Florida Board member would likely not experience the same humiliation today, which she faced in the late 1990s.
The “Audacity of Hope”
This trademark phrase of former President Barack Obama has special meaning for the Parkinson’s community. Back in “the day” -- including the 1970s when my own stepfather (and therefore my mother) lived with Parkinson’s -- few of us thought of PD as something that we could fight and conquer; we thought of it as one of many inevitable dimensions of the aging process.
One dramatic way of looking at this is to compare how different is the attitude that we bring to diverse diseases like cystic fibrosis, AIDS and breast cancer, that primarily affect young people and those of middle age. These, quite properly, we treat as public health crises demanding public attention and a focus of public policy. Parkinson’s, however, many of us think of as a dismal but inevitable fact of life for 10 million or more people around the world.
This image has changed markedly over the last 20 years. From the dramatic pounding of the gong by Muhammad Ali at the opening ceremony of the 1996 Olympic Games – his infirmity with PD on full public display -- to the much greater levels of research investment, public attention, and private initiative that we see today, there is clear worldwide rejection of traditional acceptance of Parkinson’s as just “a fact of later life.” It is not.
We are not there yet, but we are a heck of a lot closer that we were just two decades ago. It’s time for us to reclaim that special audacity of hope.
Robin A. Elliott helped to launch the World Parkinson Congresses in 2004 in his role, at that time, as the Executive Director of the Parkinson’s Disease Foundation. He served as a member of the Steering Committee for the first four World Parkinson Congresses. He is now the Emeritus CEO of the Parkinson’s Foundation.
Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®.