The genesis of this column began with a question.
The answer to my question was 1, as in ‘one.’
The question?
How many times does the word, Lewy, as in Lewy body dementia, appear in an 82-page report entitled: World Research Funding and New Technologies for Alzheimer’s and Dementia Treatment.
The report created by the Primary Research Group, and written by Annika N. Alexopoulu has a lot of good information, including a grid of all Dementia/Alzheimer’s studies currently being conducted, dozens upon dozens. Not a one had Lewy body in its title. Nearly all had Alzheimer’s in its title.
The report by Primary Research Group Inc. says it helps its readers or clients understand “how much are various scientific funding agencies worldwide spending on on Alzheimer’s and dementia research and into which areas is it flowing? Which universities are getting these grants and contracts? Which private companies? What new approaches and products are gaining ground?”
It’s a business report plain and simple. I have no issues with that. The more we know about the spending channels the better.
But I do have a problem holding Lewy hostage. Where’s Lewy? Unknown and broke?
Lewy, call it by its name.
The report was written by Annika N Alexopoulou who graduated from the University of Surrey with Ist class honors degree in Biochemistry and holds a PhD from Imperial College London. reviewed journals. A company spokesman waived the fee and sent me the report but did not answer a list of questions I had. The main one being: Where’s Lewy?
So, again, where’s Lewy? Still being hid away, I’m afraid.
Of 16,077 words on those 82 pages, ‘Lewy’ appears a total of 1 time. That’s right, once – 1. That is not a typo, stop looking for zeros.
And I’m sure you want to know how the word was used. It was on page 6 and went like this:
Pathologies such as vascular disease and Lewy body often coexist with AD.
Really?
We already believe Lewy body proteins malfunctioning are the likely cause of the second most prevalent type of degenerative dementia. And now we find Alzheimer’s Disease living together with Lewy. Caught red-handed was Lewy, and we don’t arrest him or take him down to the station for more questioning. Why aren’t researchers flocking to do Lewy body research? It seems Alzheimer’s has power through numbers and money — and that’s understood. But I have Lewy body. And my more than million afflicted brothers and sisters just want a fair share of the attention.
Why doesn’t the medical industrial complex look more, write more about Lewy body dementia? What’s that famous quote asking the bank robber why he robbed banks. “Cuz that’s where the money is,” he said.
Lots of good people are trying, but what do you do when the government shovels millions of dollars for research into dementia and they don’t even name the one with arguably the most disabling symptoms.
It’s pushed aside into the “To-Do’ list basket for sometime in the future: Remember to mention Lewy body when talking about dementia, the note might say. Apparently it’s that one that Robin Williams had.
I may be making the proverbial mountain out of a mole hill. But I don’t think so.
There’s something screwy about getting a handle on Lewy.
The report itself says between 50 percent and 70 percent of dementia cases are attributed to Alzheimer’s disease. That means as many as 50 percent of dementia patients do NOT have Alzheimer’s.
The 1.4 million number for estimates of Lewy in the U.S. is an “extrapolation based on census statistics and data from autopsy studies of people with dementia, suggesting that about 20 percent of all dementia cases are due to LBD,” said Angela Taylor, Senior Director of Research and Advocacy at Lewy Body Dementia Association.
Now that is interesting – 20 percent of dementia patients may have Lewy body — and as few as 50 percent of the overall cases may be Alzheimer’s.
Twenty percent and only one lousy mention of Lewy in a 16,077- word document on dementia research. I may not be a mathematician but 1 of 16,077 – that’s not 20 percent.
So what about the money? If it was just anonymity — that’d be one thing.
In the report, it says US grants for “Dementia/Alzheimer’s Research” have steadily risen from $68.5 million in 2008 to $913 million in 2019. Taylor said funding for Lewy body has risen from $15 million in 2014 — when it was first tracked as a disease — to $39 million in 2019. Taylor said Lewy body research is rising significantly thanks to the National Alzheimer’s (and related dementias) Plan.
“In truth, it is a small fraction of what is funded for the study of Alzheimer’s disease, but what is called “Alzheimer’s” research also includes a tremendous amount of research relevant to all forms of dementia,” Taylor said. ” LBD also benefits many millions of dollars being spent on Parkinson’s disease research, which doesn’t get included in global dementia research funding statistics.”
It may be a small thing I’m highlighting here. What’s in a name anyway. I think a lot in terms of diagnosis, treatment, psychological well being and ultimately how we as a society want to recognize the best way to spend our money. Do we want to spend hundreds of millions of dollars chasing a cure when the complexity of the disease and the brain thwarts finding that magic pill. Maybe we need to allocate more money toward making a better life for those who live with the disease. More dollars going to patient care.
Lewy, call it by its name.
Mike Oliver writes frequently about living with Lewy body dementia. Check out his blog at myvinylcountdown.com