The Roadblock in Naming it Rheumatoid Disease
I believe in the power of words. They are what bind us together and occasionally tear us apart. When we agree on the meaning of a sound, e.g., “sun” means that shiny thing that shows up every morning in the east, we create a common language. Language, in turn, is one of the defining elements that create nations.
RA to RD?
I totally “get” the desire of many of us to change the term “rheumatoid arthritis” to “rheumatoid disease.” The condition is systemic – extending throughout the body, well past the range of “arthritis” – a word meaning inflammation of the joints. As the understanding of the disease has expanded it makes sense that the name of the disease evolves as well.
Popular usage has certainly impacted traditional language. A Kleenex® or a Band-Aid®, which are specific brand names, have come to mean tissues and adhesive bandages, regardless of who makes them. Much to my chagrin, “no problem” has seemingly replaced, “you’re welcome.” Every year, respected dictionaries such as the Merriam-Webster and Oxford print lists of new words added the year before. While some of these are from new discoveries from technology and science, many arrive via popular use. An example of a tech-popular hybrid is “photobomb” that was added to the Merriam-Webster dictionary in 2016.
So what’s the problem?
The problem isn’t so much like the effort it takes to turn a battleship as it is realigning the orbit of a planet.
The root of the issue is “rheumatoid arthritis” is not just a word used in casual conversation. It is a condition defined by the World Health Organization’s (WHO) International Classification of Diseases (ICD). To quote from the ICD fact sheet, “The ICD is the foundation for the identification of health trends and statistics globally. It is the international standard for defining and reporting diseases and health conditions. It allows the world to compare and share health information using a common language.”
The ICD is basically the world’s dictionary to define and track medical conditions. More than 100 countries use the ICD and approximately 70% of the world’s health expenditures are allocated using the ICD for reimbursement and resource allocation. This represents billions of dollars annually and millions of transactions and data points. It means that insurance companies, government health organizations who set policy (like Medicare and the FDA), medical organizations that define treatment standards (like the ACR and EULAR), pharmaceutical companies who seek approval for new drugs, universities that need research dollars, and even your local doctor’s office, use these definitions and associated codes.
Changing Names: It's Not Easy
Because of the ICD, changing “rheumatoid arthritis” to “rheumatoid disease” is not just as easy as doing a search and replace in your word processing program. This change would need to be championed by leading standard-setting organizations (such as the ACR and/or EULAR). This would be an extended and expensive undertaking so our champions would need to be convinced that there are valid reasons for making this change and causing the resulting upheaval in the existing system. Because the name would be changed, it’s possible that the conditions the name defines would also be subject to review. If you change the word “arthritis” to “disease” (expanding the condition from the joints to the entire body), then it’s possible that many other previously separate conditions might come under this definition – such as spondyloarthropathy or psoriatic arthritis or even lupus. This would have far-reaching effects including for medications that have been approved for rheumatoid arthritis, but not necessarily researched for the other conditions that might be covered by the new definition.
We patients can call our condition whatever we want. I personally, on occasion, call mine many words that have four letters in them. But in the larger scale, it’s not just changing the name, it’s changing policy, and that’s a lot more complicated.
® Kleenex® and Band-Aid® are registered trademarks of Kimberly-Clarke and Johnson & Johnson, respectively.
Do you expect to see a cure for RA?