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.

Monday, April 6, 2020

How to Get Nowhere

Ask us.  We know.

Consider an experimental drug for a quickly fatal disease.  One person says it's the greatest hope ever.  Another person says we shouldn't accept it without sufficient data.  Meanwhile, back at the ranch, people are dying while forces row like crazy in exact opposite directions.

Yesterday I saw the President again tout one experimental treatment for Covid-19.

On the same newscast. I saw the head of the American Medical Association say that she would not prescribe it off-label for her patients.

That's it.  Hatfields versus McCoys.  Right versus wrong.  Rowing like crazy in opposite directions.

Neither mentioned joining a clinical trial.  

That's a way to access a therapy that provides exactly the evidence that we all need to figure out whether the stuff works (and for whom).

Rather than rowing in opposite directions, how about promoting the clinical research that can can both provide the experimental therapy to people and help us reach the scientific truth?

And what if the trial isn't near enough people?  There are easy ways to fix that.
And what if the placebo is an issue for some people?  There are easy ways to fix that.
And what if people are too old or too ill to qualify for the trial?  There are easy ways to fix that.

If people would stop arguing and start promoting clinical research that is humane and informative and nimble, we would start getting somewhere.

Ask those in the fight against ALS.  The constant tension between well-meaning forces has gotten us nowhere.

There are ways to do clinical research that will fulfill the goals of both parties who today are rowing in opposite directions.  Both sides need to smarten up if we want to get somewhere.  It applies to Covid-19.  It applies to ALS.

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