ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Saturday, June 3, 2017

The Race To Eureka Needs To Start Now

And people with ALS need to be in charge of the race.

20-20 Hindsight

  • How helpful would it have been if we could have seen individual trajectories for people with ALS who have used riluzole over a number of years?
  • How helpful would it have been if we could have observed data on Americans who have been using generic edaravone with or without riluzole for the past several years?
  • How helpful would it have been to have access to data on ethnicities and genetics and experiences of people with ALS who try any number of things in their journeys?

That's water over the dam, but the massive information loss need not continue. There are a lot of good reasons to start the race to Eureka now!

To Get To Eureka, You Need Data

The promise of precision medicine is to know which potential treatments will work for which people.

And in recent days with the approval of a new ALS treatment, we have seen clinicians suggest that combinations of drugs may hold the most promise for effective treatment for people with ALS.

And there are more promising (yet not blockbusting) drug candidates that may be approved in the next several years.

We're in a world of promise without the data to take us to true Eureka moments that we need.

You Own Your Own Data

There has never been a better time in history to get ALS data out in the sunshine for all kinds of smart people to look for insights.  People with ALS own their own data, the most powerful factor in the race to Eureka.

The old public lithium spreadsheet proved that people with ALS can contribute data that will tell a story in a hurry.  We have better tools now, e.g. www.patientslikeme.com , but the tools only work if people contribute their precious data.

There are several individual patient tracking portals (e.g. ALSTDI PMP, AnswerALS) that could release selected data to a common public place like patientslikeme.com to keep people from ALS from entering data in several portals.

And there are patient organizations that could encourage information sharing but have traditionally avoided it like the plague for some reason.

Who really has the incentives and motivation to figure out what specific subgroups of people respond to an ALS treatment? Think about that. It's the people with ALS.

Do you want to go to Eureka?  The race can start now with people with ALS in command.