Why Parkinson's matters! Hugh Johnston from the PD Avengers
A fundamental issue as we move forward with more aggressive Parkinson advocacy is answering the question, why does Parkinson’s matter? Who better to answer this question than one of the founding PD Avengers, Hugh Johnston. We sat down to pick his brain.
Hugh Johnston, one of the founding PD Avengers
Can you help us frame the progress made in Parkinson’s Disease?
A good starting point for context is to discuss North America and Europe. At the end of the 1960’s it was a time of change and of contrasts. More than anything there was hope for progress - buoyed by a western society that was starting to reject the familiar pattern of peace & war, a baby boomer generation that “wanted it all,” and a belief in endless opportunities (symbolized by Neil Armstrong landing on the moon).
In many ways things are better, and in others…not so much. Life expectancy has expanded dramatically, from around 67 years of age in 1960 to 78 years in the US…and currently over 80 years of age in the U.K. and Canada. As a result though, the proportion of one’s life experienced in poor health has also grown— now 10-11 years.
Across the world we’ve experienced digital and cultural revolution and the global economic landscape has changed. China now has the 2nd biggest economy and India the 6th largest. The world’s population is now 7.8 billion— this number was less than half of that in 1960.
These changes and contrasts have been matched by dramatic improvements in health and health services. Since the 1960s there has been differing accessibility to advancements. In the 1950’s polio was responsible for death in ½ million people each year— and today it is nearly eradicated. Vaccines dropped measles cases by 73% since the year 2000, and tuberculosis deaths have been reduced in developed countries—the rates are however astonishingly high outside the developed countries.
Most parts of the world have observed an increase in chronic health conditions— not just from aging but also from the effect of diets which are greater in processed food, tobacco and alcohol use— as well as sedentary inactivity. These factors have in part contributed to a dramatic increase in conditions like cancer, diabetes, heart disease and stroke.
The half century from 1970 to 2020 observed a huge investment in medical research— and treatments have led to improvements. For example, deaths in the U.K. from heart disease have decreased by half since the 1960’s despite obesity levels going from 1% of men to 25% over the same period. Another example is that the 5 year cancer survival rates in the US are now over 67%. Killer conditions can now be managed and there are examples of some large scale successes. Parkinson’s matters and can be next.
Why are we stuck on levodopa?
Parkinson’s matters and we should push for better therapies. The primary medication still used for Parkinson’s at the end of the 1960’s was Levodopa— a dopamine replacement therapy that treats many of the symptoms of Parkinson’s but becomes less effective on many symptoms with disease progression. Today, some 50 years later, the primary medication is …..still levodopa.
Why is there a lack of Investment?
Despite doubling prevalence rates for Parkinson’s disease in the US since 1970s, investment in real terms in medical research has shrunk in the last decade (when including inflation). The same general statistic applies to the U.K. Commonly, each new generation of patients and families who live with Parkinson’s disease are told “a cure is around the corner”. As each generation passes on— the next generation finds out there is still “no cure for Parkinson’s”. Parkinson’s matters and we need to push for more investment.
What are the key facts about Parkinson’s disease
that should make you think “it matters?”
First, if you live long enough there is a pretty good chance you will get some form of Parkinson’s Disease; a 1 in 15 chance in fact if you are a man.
The Physicians Health Study of male doctors in the US showed: A PD Lifetime risk of 6.7% (95% CI 6.0–7.4) for Parkinson’s disease & the risk in this study increased with age.
There is great variability in symptoms, pace of disease progression and lifespan in Parkinson’s depending on one’s age of onset and which type/sub-type of Parkinson’s one gets.
Parkinson’s will in most cases shorten your lifespan. More research is needed on subtypes as there may be great variability here….
The often quoted “you don’t die from Parkinson’s, you die with it” never quite “jived” with the hazard ratio for PD cases vs controls. On average, you die younger when you have Parkinson’s disease, but few Parkinson’s patients are average; age of onset, disease type/subtype and how proactive you are at managing & treating your symptoms all play a big part in whether Parkinsons’s will shorten one’s life or not.
Parkinson’s disease costs society - individuals, their families, governments and insurers a fortune.
The one million people diagnosed with Parkinson’s in the US in 2017 amounts to $52 billion USD in total economic cost(s) per year. Estimates in other countries are also in many cases in the billions of dollars.
Not all Parkinson’s is one disease— it is the Parkinson’s diseases— only 15% have an identifiable genetic defect.
Approximately 20 percent* of people will be diagnosed with another more aggressive type of Parkinsonism, including multiple system atrophy (MSA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and Dementia with Lewy bodies (DLB). (courtesy Parkinson Canada). We used to call these “bad nasty” types of Parkinsons the “malignant type.”
If all of the above are not enough to convince you that Parkinson’s matters, here are few more facts that may tip the scales:
Parkinson’s may disable you if you get it, and it can impact your spouse and family. Living with and caring for a Parkinson’s patient, particularly one with a more aggressive type of the disease, “isn’t for the faint of heart.”
Parkinson’s U.K. research has demonstrated an increase in stress related symptoms, increased co-morbidities and worsening financial status for family members of people with Parkinson’s Disease.
Data suggests that if you are a woman, you live alone or if you are lower income, the level of care you receive at home will be significantly worse.
If you live in a third world country, you may not be able to access levodopa, the simplest and most important form of treatment.
Since the facts aren’t pretty; what we do with this knowledge and data is up to us. We have no wish to “hand the baton” to the next generation of Parkinson’s patients and their families.
Why does Parkinson’s matter. Well we don’t want to misrepresent that “a cure” is in fact “just around the corner”. Not only does Parkinson’s matter, It could easily happen to you or someone close to you. We are not close to a cure and we need to double down on our efforts,
If the numbers strongly suggest that Parkinson’s is important, why do we seem to be “ignoring the numbers”.
Where is the private sector? The answers include— the time it would take to payback any investment made; research is uncertain, our success rate isn’t all that great, it takes time to discover groundbreaking medical treatments . The private sector can’t be the whole answer.
If Parkinson’s matters what is the call to action?
Recognize the numbers, the economic cost and the payback for society, and decide that you will do something about— it instead of waiting around for someone else.
Observe the Covid 19 treatment development story. Let’s change the way we do research to get results faster. Let’s identify where we can speed up— “decades” is no longer an unacceptable time-frame for those with Parkinson’s.
Start working together and go full time in your efforts to develop new treatments that are effective.
Collaborate in a race for a cure; put intellectual property and business as secondary to the primary goal of making Parkinson’s matter.
“Parkinson’s matters.” You may get it. It can disable you and take you before your time. It will impact your family in ways you haven’t yet thought of. It can happen to you or someone you love.
There is no “easy” diagnosis of Parkinson’s.
Make a difference!
Join the PD Avengers and put us on the path to Ending Parkinson’s!
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 #LessonsFromTheBedside
He also serves as the Medical Advisor 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.
