Frontline, War on RA, October 19, 2016 — The war rages all around. The outcome is uncertain, but things seem to be at a stalemate. It is true that progress has been made over the last two years of daily battle; but from this reporter’s standpoint, forward progress seems to be halted at the moment. As I write this dispatch my hip hurts badly, my fingers are swollen, my back is inflamed as ankylosing spondylitis takes its toll, and the left elbow is once again hurting as the old nodule returns. This, despite two lidocaine patches, weekly injections of methotrexate and the use of six biologic drugs over the last 16 years.
The war might seem lost already since so many different biologic drugs have been utilized with only temporary progress at best. I remain hopeful that the seventh or eighth or fifteenth biologic will suppress my immune system and hold the damage at bay. I have been told repeatedly that the generals are working on new strategies and weapons. As I examine my place in the foxhole, with joints hurting all around, I have to admit I am skeptical. However, just recently, rumors of a new and more promising weapon have emerged. My hope is that it will come to fruition, sooner rather than later.
As I look up and down the line, I see many who are in the same predicament as me: soldiers advancing, hoping that their personal war has come to an end, only to find that months later they are back at the front, holding on to the little pieces of life that are under attack. Generals sound the alarm and announce on TV the newest weapons — these work for some, a few longer than others, and then inevitable retreat. The result of this war seems to be eventual defeat; even as we cry for a cure louder and louder, the hope of one seems further away.
The youngest among us suffer more than we can imagine. Those who fight the war with Juvenile Idiopathic Arthritis seem more numerous than ever, and as adults they wage all-out war. It is of considerable note that in the United States, there are only around 200 pediatric rheumatologists, or one for approximately 1,500 children who suffer from JIA. I find this part of the battle most chilling. I long for better and more sustained treatments for the war they fight.
You may ask what you can do to support us here on the front line. The easy answer is money, of course, but as I sit here in the middle of the battle, money seems plentiful and well-funded research projects abound. However, I know that researchers in all areas of the fight still need support and I am glad to chip in. But there are two other things that we all can do.
First, we can educate. Unlike other wars, this one seems almost silent at times. We don’t hear much about the disease we call our own. I see advertisements about running events or walks for a cure for other diseases, but I see little of RA. It is not that I am jealous, but I sense that if people understood more about RA and all the other forms of arthritis, then word might spread further and faster about the battle we wage.
Second, I ask that you help to pass legislation and support our efforts by speaking out to legislators and others who can help to bring about change. Loud voices are often the ones that are noticed and believe me, this war must be noticed. With issues like opioid intimidation and invisible disease discrimination, we are having much difficulty both here on the front lines and in the rear guard.
Please join the fight.
This article is the first in a six-part series by Rick Phillips, titled “The War on RA.” The following installments will be published over the course of the next few weeks.