Its probably too much to ask to officially change the RA title outright, but I do hereby humbly recommend that we make a small step toward clarification by officially adding the descriptive prefix of autoimmune to the RA label: ARA. “Autoimmune” is one of the few reasonably avant garde terms that has caught some viable traction in the media. An additional option would be to faze RA into the more compelling rheumatic arthritis, (which has a precedent vis-à-vis psoriatic arthritis), or even a combination of the two descriptive nouns.
These type name changes—and I’m sure there are other possibilities—could help give distinction and substance to the disease, and give due justice to those who have suffered too long with too little empathy and insight under the bland “rheumatoid” label. The important goal is to make it quite clear to the public that we are not dealing with a condition here, but a disease, a rheumatic disease, and a very serious one at that.
Empower The Public!
Whatever the nomenclature, I truly get the feeling that the general public is anxious to learn more properly what autoimmune inflammatory diseases are about, and we need not disappoint them. Specifically, the public deserves basic knowledge to understand how rheumatic diseases are inflammatory, but not infectious, and that most types have been proven to be driven by an out-of-control immune system—not “too low” immunity, but an over active, autoimmune state. Also, we should be sharing and teaching some of our key operative phrases, such as systemic inflammatory, antiinflammatory, immune mediated, drug-induced, etc. with the public as well.
Patients surely deserve to be better informed about the basic process of their disease. We can’t have patients feeling guilt or shame for their misery and their inability to function in society. To avoid this, we need to better endow them with the basic knowledge of what is happening to their bodies, and to give them the verbal tools to be able to share this information with others. And, surely, to educate them and their families that they didn’t do anything “wrong” to deserve their fate.
Ultimately, these same messages are what we need to get through to the public as well. To wit, it’s a rare occasion when one encounters a treatise that genuinely attempts to explain to the public the intricate and serious nature of autoimmune and/or inflammatory arthritis and how, once unleashed, an autoimmune rheumatic process can lead to an unrelenting downhill course of pain and auto-destruction of joints and body tissues. Consequently, if the public and the powers that be (including third-party insurers) don’t have respect for the complexity and gravity of a disease, how could they possibly have respect for the profession treating that disease? And, yes, to cut to the quick, reimbursement for treating such unheralded disease is not likely to lead the pack.
