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.

Friday, September 5, 2014

Easy Peasy Can Work

Yesterday I spent a day discussing patient engagement in clinical research with some impressive e-patients, healthcare professionals, and pharmaceutical company experts.  There is a critical area of mutual benefit, especially for patients with dire, untreatable conditions, that needs to be seized better.  It's a complicated problem.

People with ALS have a very short window of eligibility for clinical trials.  Trial sponsors have a problem akin to trying to catch fish in a very fast-moving river.  It's a constantly changing population and they're not in front of them for long.

After a good night's sleep, my mind is saying that maybe some of the solution isn't so complicated.

Here are two extremely easy ideas that could make a positive difference for both people with ALS and clinical trial sponsors --

  1. Start every ALS support group meeting with an announcement of all enrolling clinical trials within 500 miles.  Make it an institution.  That's the way every support meeting starts, everywhere.
  2. Put a 3-ring binder in every ALS clinic with a page for every enrolling clinical trial.  In addition to the old issues of People and Readers Digest, people with ALS and families can flip through clinical trials. PALS and CALS are actually at the perfect spot to talk to the doctors about anything interesting that they may see in that binder, even trials that are being conducted elsewhere.  It would be easy enough for a national organization to provide a fresh file to print and put into the binders weekly.

That's it -- two simple, easy ideas, and they don't take buckets of money.

Every day wasted filling a clinical trial is as important as a day of lab work or a day of data analysis or a day in the FDA approval process.  Every day is precious.

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