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It seems easy enough to tally death certificates to get an accurate count of those who have died from ALS each year, but it's not so simple.
When the physician scrawls the cause of death, will it be legible enough for the data entry person at the health department to decipher, "ALS" or "Amyotrophic Lateral Sclerosis?" If the death certificate is legible, then the big challenge begins. Death certificates are encoded with ICD (International Classification of Diseases) codes. ALS falls under Anterior Horn Cell Disease (335) and should have been encoded as Motor Neuron Disease, 335.2 in ICD version 9 or G12.2 using ICD version 10. In a country where simpler things like names and addresses are often misspelled on death certificates, it takes a giant leap of faith to think that those ALS deaths have all been encoded correctly as 335.2 or G12.2!
The Centers for Disease Control and Prevention maintain tabulated data from the death certificates. Unfortunately ALS isn't among the top 113 diseases which are included in their summary publications. It takes a lot of digging to find 335.2 or G12.2 in the files at cdc.gov , and the accessible data aren't terribly current. A dig through the CDC website in 2007 found that there were 4254 death certificates in the U.S. encoded with cause of death 335.2 in 1998.
It's bad enough that we have to bury our loved ones who have died from ALS. We should not be burying their death statistics, too.
It's a disease that kills an estimated 15 Americans every day. Don't let our deceased loved ones be out of sight and out of mind.
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| Lou Gehrig died 66 years ago. 66 * 365 * 15 = 361,350 American deaths. That's close to the entire population of Miami based on the estimates. It could turn out to be a lot bigger number than that if we were to start counting more accurately.
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