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.

Thursday, December 8, 2011

Nothing Is Easy With ALS

And sometimes the obstacles are just wrong.

http://www.alsa.org/news/archive/fda-approves-neurx-diaphragm.html

There has been an interesting saga described on the forum at patientslikeme.

A man with ALS recently made arrangements to go hundreds of miles to Cleveland to have the DPS described in the article at the above link "installed."

At the 11th hour in Cleveland his insurance carrier denied this treatment. He packed up his things and went back home.

Note that this man has ALS and travel is difficult and the breathing that he is trying to preserve with the DPS diminishes every day in the relentless ALS downhill slide.

Now he has finally found out what the difficulty was with the insurance coverage. The insurance company was not aware of the FDA approval of the DPS for ALS. The insurance company hasn't learned how to Google? Everything is fine now and he can go back to Cleveland for the procedure.

No, everything isn't fine now. The patient was jerked around by a healthcare delivery system that included an insurance company that made a big mistake at his expense. Precious time was lost. Precious resources were spent by the patient because an insurance company made a big mistake.

Nothing is easy with ALS, and we have a healthcare delivery system that continues to show its weaknesses at the expense of people trying to deal with this disease. Just as they introduced stress tests for banks during the banking crisis, perhaps ALS could be the stress test for healthcare delivery. Few organizations would pass.

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