By Rochelle Odell, Guest Columnist

I started researching government statistics on overdose deaths a few weeks ago and learned the data is compiled by the Healthcare Cost and Utilization Project (HCUP), which is part of the Department of Health and Human Services.

HCUP keeps databases of ICD codes (International Classification of Diseases), which are built from hospital billing records. Basically, the codes identify what someone was being treated for at the hospital at the time of their death.

I realized that the ICD coding often begins when a person first enters the healthcare system (i.e. a trip to the emergency room or admission to a hospital). I also noticed that ICD codes for opioid overdoses do not separate the legal use of opiates from illegal drug use.

Then I learned that if a person dies, it could be months before the final coroner's report comes out. Does the government go back and change the ICD codes once the actual cause of death is determined?

Unfortunately, they do not.

So it all boils down to whether a person has opiates – any kind of opiate -- in their system at the time of death. If they are a chronic pain patient, there’s a good chance they will have opioid pain medication in their system. But rather than focusing on the true cause of death, everyone seems to immediately assume it was the medication.

I brought the point up with HCUP and told them their numbers were flawed and why. I was surprised to receive a nice email in response, validating my concerns and stating they would be passed along to the correct agency, the National Center for Health Statistics (NCHS).

“We will forward your email to NCHS to see if anything can be done to make the separation between illicit and licit use clearer in the coding,” HCUP replied.

If a citizen can find these flaws in a short time why can't anyone else? And how do I know if my concerns were truly shared and who received them?

As pain patients, we need to ensure that our families are aware that if we die from something unrelated to opiates, they’ll need to advocate for us even in death. Just finding opiates in our system does not mean we died of an overdose.

A good example of what could go wrong – and misreported -- happened earlier this month. A neighbor told me she had been walking her little dachshund when she stopped by a friend's house. The door was ajar, but there was no response. She sends her dog in and gets him to bark. At that point, her friend finally woke up. She had apparently suffered a stroke!

They called 911 and my neighbor waved down the ambulance as it approached. Her friend is in her 60's and right away the EMT verbally stated "it must be an overdose."

My neighbor immediately corrected the EMT and said her friend was not on pain medication and that this was not an overdose.

If my neighbor had not been there to set them straight, her friend may have been taken to the hospital and given the ICD code for a suspected overdose. The code could have followed her throughout her stay at the hospital, and if she had died, her death may have been wrongly reported as an overdose.

We need to stop this nonsense at step one.

Rochelle Odell lives in California. She suffers from Complex Regional Pain Syndrome (CRPS).

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.