Sunday, March 6, 2011

Lord, What's A Cubit?

The world likes to measure the "problem" of a disease in the number of patients affected today. We need to learn to tell the story better -- that the "problem" is actually the way we are measuring the ALS problem.

We used to measure boats in cubits and shoe size with machines that dumped xrays in our feet. It is not unprecedented to change the paradigm for measuring something.

So... how do we quantify the real problem when we seek attention and resources for ALS? What's the pertinent measure?

  • I would love to have a "wow" visual to show the problem of pouring a large incidence into a small prevalence.
  • Is there some kind of incidence::prevalence ratio that makes the ALS pop up as a more critical problem than other diseases (that are nonetheless difficult but not as quickly fatal)?
  • One good thing that I can see coming from a reduced perception of prevalence is that asking for quicker SSDI benefits or better homecare coverage or continuing veterans' benefits should not be as difficult since the cost would be perceived as smaller. Perhaps we can actually leverage that "it doesn't affect many people" perception and step up the benefits available to those dealing with the beast.
  • The case for research is a tough one unless we can produce numbers that show the market value of expanding that prevalence number. That number would grow and grow with some life-extending therapies.

I hope that we can use our heads to explain the problem better to the public and to our government. We all know that ALS is a problem... but the old measures will make it continue to live in the shadows. Urgency is not stressed by fixating on how many people are alive with ALS today. There are not enough who are permitted to stay alive today. That's the problem!

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