This July marks my 21st year of living with rheumatoid arthritis (RA). I was diagnosed with this painful, debilitating autoimmune disease at age 18, right after graduating from high school. It was a terrifying and devastating blow, and I remember waking up every morning wishing that the pain and disease would just leave me alone and go away. Sadly, it didn’t go away and it never has, even for a temporary period of remission. Also since those first days of diagnosis and wishing the illness away, I desperately wished for a cure—or something to let me get back to being a healthy and active teenager, instead of someone who could barely get dressed or wash her hair on her own.
Today, over 20 years later, I’m still wishing for a cure for RA, and in the meantime I’m hoping for the development of better and more effective medications and treatments to help ease my pain and stop joint damage. Ultimately, that’s what all of us RA patients want and need, and we need it urgently. This need and the realization of its importance in the treatment and hopefully one day cure and prevention of the disease is what has finally made me begin to get involved with clinical trials.
What are clinical trials? According to Clara Health, which is a company that helps connect patients with clinical trials to find new and more effective treatments for their diseases, clinical trials are research studies where volunteers help researchers look at new ways to prevent, detect, or treat conditions. The results of clinical trials help doctors find new treatments that are safe and effective for patients.
During these 21 years of living with RA, I have tried several different treatments: corticosteroids, DMARDs, NSAIDs, and biologics. Right now I’m taking my eighth biologic drug, which is a monthly injection of Simponi. Technically, I’ve been on biologics 10 times, taking Remicade and Humira twice over a span of many years. Being on a biologic drug for the 10th time since 2002 is not an accomplishment or something to celebrate; I’m growing increasingly worried about running out of effective treatment options to help keep the relentless RA inflammation under control. I think there are two other biologics left that I haven’t tried yet, and this is a very scary thought. What will I do when I run out?
I don’t know.
So why am I only now getting involved with clinical trials? A fellow RA friend of mine is how I finally began to get educated about them by connecting me with Clara Health. As a patient advocate and Breakthrough Crew Ambassador herself, she recommended that I join the “Breakthrough Crew,” which is a program that helps empower patients and caregivers and raises awareness about the power of clinical trials and breakthrough research. I checked out the website and immediately thought, “Yes! I want to do this. I SHOULD do this!” I’m all for helping other patients and especially those who who are suffering from a lack of treatment access and options. I’ve been in that boat before; I am in that boat right now.
Before being introduced to Clara Health, I knew next to nothing about clinical trials, other than a vague notion of groups of people testing drugs vs. placebos. That’s it, really. I had no idea about what the different phases are, how participants are selected, if there’s any monetary compensation, how long trials last, how safe they are, or anything else. What is it really like to participate in a clinical trial? I can’t quite say, as I haven’t participated in one yet. I hope to soon, though!
So far I’ve begun to search for clinical trials through Clara Health’s website that are of interest to me and for which I’m possibly qualified. I recently signed up for a trial for a new treatment for Sjögren’s Syndrome and dry eyes. The treatment was some sort of eye drops and I thought this could be a good way to start trying out clinical trials. I was diagnosed with Sjögren’s Syndrome in 2004 after a terrible year-long bout of extreme eye inflammation, pain, blepharitis, and dry eyes. Since then, I’ve tried nearly every type of eye drops available with no success. If some new drops become available that can help me wear my beloved contact lenses again, sign me up! Also exciting about this trial, I noticed, is that it wasn’t far from my house and it paid quite a bit of money per session. Hooray, yes, I’ll do it!
Unfortunately, the new eye drops and me weren’t meant to be. After a couple initial e-mails with someone at Clara Health, it turned out that I wasn’t qualified for the trial. Why? Because I have active rheumatoid arthritis. Bummer! But, this “failure” won’t stop me from continuing to search for other trials and get more involved learning about trials, research, and new opportunities for patients.
For RA patients and for others out there also suffering from incurable, chronic illnesses, clinical trials are a crucial part of new treatments and even cures being developed. Time is running out for all of us, I would argue, and we need more and better options right now.
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