Lifetime risk, 1 in 300

In the world of ALS advocacy, there is no shortage of really difficult, even intractable issues. But sometimes you spot some low-hanging fruit, offering the promise of a quick and easy win, and you wonder why we haven’t jumped on the opportunity.

A case in point: We all share the goal of making the public more aware of, and more concerned about, ALS.

We could dramatically improve the impact of public awareness campaigns if we used different, more impactful metrics to describe how common the disease is.

For some reason, the websites of almost every ALS advocacy group in the US use two perfectly accurate but very easily misunderstood epidemiology yardsticks to depict one’s odds of getting ALS. One is incidence rates, or the number of new cases per year, which is 2 in 100,000. The other is prevalence, or total number of people living with ALS. Depending on who is doing this estimation, the prevalence is described as between 15,000 to 30,000 people living with ALS in the US.

Both of these are correct, but make the disease sound really, really rare. But that’s only because the general public isn’t familiar with how to interpret this kind of statistic. The 2 in 100,000 figure is one’s risk of being diagnosed with ALS each year. If the average age of an American is around 80 years, that means one’s odds of dying of ALS are actually a whole lot higher.

A much more impactful statistic would be lifetime risk of being diagnosed with ALS. A colleague in the UK, and a person living with ALS, Lee Millard, reports on a 2006 study in the Journal of Neurology (C. Johnston et al, “ALS in an Urban Setting: A Population Study of Inner City London”) which concluded that the lifetime risk is 1 in 300. One in 300! That is a statistic that has immediate meaning, and packs a powerful punch. A general reader can easily visualize a group of 300 people — it’s the size of typical high school graduating class. If people started envisioning the risk of ALS in the kinds of tangible terms that lifetime risk figures deliver, it would, I believe, raise awareness much more effectively.

In the UK, the flagship ALS group, the Motor Neuron Disease Association, has embraced the lifetime risk statistic of 1 in 300 in its fact-sheet about the disease.

Why aren’t we doing the same in the US?

I understand that some people dispute whether 1 in 300 is accurate, and they may insist on a higher figure. It doesn’t matter. Whether 1 in 300, 1 in 500, or whatever figure the data support, lifetime risk is simply a more powerful way of conveying to the public how much more common the disease is. And it solves the puzzle of how such a seemingly rare disease can be everywhere around us; how almost everyone knows one or several people who have died of ALS.

Mobility matters

Thanks to my brother Pete and sister-in-law Stephanie, I am scooting back and forth to work in a golf cart

I can still walk the half mile to my office at Davidson College (for that matter, I can still walk 2-3 miles at a go if I have to), but I’m preparing for a time when that starts to get hard or impossible. The solution? My brother Pete and sister-in-law Stephanie own a golf cart that they have used to move around their neighborhood. It actually qualifies as an electric car — it can reach 25 mph or more and has all the essential features of a car, from lights and turn signals to side view mirror and seat belts. It’s got a SC license tag and registration and is insured. They offered to let me borrow the cart to get to work and back so I can pull right up to my building and, when the time comes, carry a foldable walker in the cart. After checking with the college public safety office and the town police, it’s all legal and approved, so now I have a new and very, very convenient way to get to work each day. There is a cut-through path from our road to the college parking lot that I use to avoid traffic altogether. Thank you Pete and Stephanie! Next step is to decorate my new ride with some Davidson, Xavier, and Clemson pennants, and a “Defeat ALS” bumper sticker…. I’m also trying out a leg brace to help with foot drop. It helps a lot, I can walk with a better pace and gait, and worry less about tripping up. Mobility is a precious commodity….

Thank you, Cincinnati kin

family and friends gathered for the Walk to Defeat ALS in Cincinnati today

It was great to see this photo of family and friends in Cincinnati gathering for the Walk to Defeat ALS today. They raised over $4,000 for the “Ken’s Caucus” fundraising team. Special thanks to cousins Angie Menkhaus and Phil Menkhaus for organizing this. It means a lot to me. Thanks everyone!!