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, October 7, 2011

What We Have Here Is A Failure To Communicate

Last week the Diaphragm Pacing System (DPS) was approved by the FDA for people with ALS.

For years patients who were in the clinical trial of this pacemaker to keep the diaphragm working attributed it to enhancing their quality of life. Finally all patients have access to this option which could be a valuable tool as an early intervention. It's a simple concept.

This week patients are asking their physicians about the DPS and some of the docs don't seem to know about the DPS. "I'll have to look into that," translates into wasted weeks for a person dealing with the ticking ALS clock.

If there were a new prescription drug for ALS, you can be sure that docs would be ready, able, and willing to get patients started. Why the DPS, only the second FDA approved product for ALS, is such a secret among healthcare professionals is just incredible.

So, in case this is of help for those reading this, here are some links with information --
Synapse Biomedical Information (site includes Medicare information and locations with expertise)
Important Patient Q&A Document (Dr. Onders at The Cleveland Clinic is the developer of the DPS for people with ALS)

C'mon healthcare delivery system. It's past time to start delivering for people with ALS! This is an early intervention that is a much simpler decision than those later interventions. When dealing with ALS, "first do no harm" involves some added responsibilities.

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