It's An Expensive Trip To G12.21

Every person with ALS can tell about an expensive journey to get to the diagnosis.

There are millions of dollars worth of wrong diagnoses along the way.  There are tests.  There are surgeries.  There are physical therapies.  There is lab work. There are speech therapies. There are more wrong diagnoses.  There are MRIs.  There are drugs.  There are scans.  There are psychiatrists.  There are more doctors.  There are braces. There are more wrong diagnoses.  All the while, the person whose ALS is not yet diagnosed continues to decline.

Finally, one day, often a year or more after the start of the expensive journey, a physician says, "You have ALS."  G12.21 is encoded on a medical record.

Mom had one of those long, expensive journeys. She declined terribly along the way. She didn't get her ALS diagnosis until just four months before the ALS took her life.  But for the initiative of a sharp speech therapist, the diagnosis may never have happened.

Some cases of ALS are fast.  Most cases of healthcare delivery are slow.  They are even slower for people who don't have good insurance coverage.

How many people die from ALS without ever finding out that they had ALS?  I guarantee that problem will get worse if yesterday's AHCA legislation moves forward.