by Karen Telleen-Lawton, Noozhawk Columnist (read the original in Noozhawk by clicking here)
Have you ever scrutinized your medical bills to decipher the data? The “Amount owed by Patient” may be the first place your eyes seek, but even more important is an abstruse alphanumeric figure called the ICD medical code.
This little guy holds the secret to getting billed (and reimbursed) correctly. More critically, the code also tags your record to increase the likelihood that you receive the right treatments and clinical trial opportunities for your disease.
Medical coding dates to 1893, when the International Statistical Institute first listed the International List of Causes of Death. These data were bundled into the World Health Organization at its creation in 1948.
Now called the International Classification of Diseases (ICD), the ICD code translates the descriptions of diseases, injuries, and health-care procedures into alphanumeric codes to accurately describe diagnoses and procedures.
Most countries use the codes for recording and tallying diseases. The United States makes use of a WHO-approved version of the ICD for billing purposes: the ICD-CM.
This U.S.-modified version is updated annually based on input and suggestions from payers, physicians and other medical contributors.
The journey of a new code is a bit arcane. A twice annual meeting brings together coding and medical professionals to advocate for code changes.
This journey was completed recently with the help of a 30-year professional in the coding industry, whose son has a rare liver disease.
“It always bothered me that PSC [Primary Sclerosing Cholangitis] didn’t have a code,” Trish Stoltzfus said in an interview for PSC Partners, an advocacy group.
“I didn’t understand why. With what we worked through this year, I know why there wasn’t one before. We were able to help them understand why it is important now,” she said.
Since PSC is rare, she said, WHO originally said it didn’t warrant its own code.
“However, as more and more liver diseases have been researched, we know PSC is one of the last diseases with no good treatment or cure. It became very important for PSC to have its own code,” she said.
While HIPAA laws prevent giving out personal information on patients, a plethora of data can be teased out of groupings of patients.
Big data can provide precise information on how different drugs and treatments are tolerated in specific populations.
The change process began when an international researcher asked PSC Partners if they could suggest someone to help advocate for a new code. Stoltzfus agreed to navigate the Center for Disease Control (CDC) change system with the researcher.
“We were able to get on agenda in Washington, D.C. in September 2017,” she said.
Hepatologists advocated for the clinical need for the new code, while Stoltzfus presented the coding perspective. The next six to eight months were spent resolving arguments and settling details. On Oct. 1, a new ICD-CM code was born: K83.01.
“It was one of the highlights of my career,” Stoltzfus said.
If you or a family member has a disease, find the code on your paperwork and do an Internet search to verify it is correct. Advocate for yourself by making sure your medical and lab work are all accompanied by the your code.
If you are unfortunate enough to have PSC, verify that your doctors and labs use the new K83.01 code.
Make it a point to contact your medical team by Oct. 29, which happens to be PSC Awareness Day.
Just as importantly, take heart that the code change may increase PSC research, with treatments or a cure in the foreseeable future.
Karen Telleen-Lawton, Noozhawk Columnist
Karen Telleen-Lawton is an eco-writer, sharing information and insights about economics and ecology, finances and the environment. Having recently retired from financial planning and advising, she spends more time exploring the outdoors — and reading and writing about it. The opinions expressed are her own.