Stacy Courtnay is the community network chair for the Arthritis Foundation in Atlanta highlights a report that discusses how understanding patient experiences in RA can shift questions researchers ask.
Rheumatoid Arthritis (RA), a chronic, degenerative, autoimmune disease, hit me out of the blue when I was 24 years old and newly married. After my diagnosis, I spent years navigating the best treatment path for myself. While there are now many options to treat RA, it certainly is not a one-size-fits-all disease, and it often feels like the research does not reflect what matters to people like me. I’ve learned to ask myself what matters most to me, because there is no perfect path.
Over the past year, I have worked with the Arthritis Foundation, the Innovation and Value Initiative, and others living with RA to consider how our journeys could better inform health care research. Some may minimize using the lived experience of a debilitating health condition such as RA as too subjective or soft for serious health outcomes research, but personal experiences can help researchers ask the questions that matter most to patients and even increase access to the right treatments. Our newly released report, First Hand Experiences with Rheumatoid Arthritis shows how these experiences can shift the questions researchers ask in the first place.
When I was first diagnosed, I couldn’t reconcile that I was young and healthy, yet this chronic disease was something I would have for the rest of my life. I was adamant about not taking “real medicine,” because I was terrified of the potential side effects.
Like others diagnosed with RA, I quickly learned that I would end up in a wheelchair if I didn’t accept my new reality and start a disease-modifying drug. More than 15 years ago, the data on the safety of biologics before or during pregnancy were inconclusive. I chose to only take prednisone to mask my pain and symptoms for a few years because I couldn’t accept the idea of needing a biologic.
My husband and I decided to fast forward our plans of having a baby. I continued using the steroids during my pregnancy (class C – “as safe as you can get” with drugs during pregnancy). I had a healthy baby boy, John, in September 2007. Once he was born, I began to wean myself off the steroids to find a biologic that would stop the progression.
Finding that right path was a roller coaster of trial and error, both physically and emotionally. It took almost 5 years of trying different medications and regimens before finding the right one. As the Arthritis Foundation report found, I experienced a “guessing game” with my doctor, as he tried to determine what would work for me, rather than having access to any clear guidelines about what would work best. Meanwhile, I had so much pain that I couldn’t pick up my newborn baby or put a bottle to his mouth; all I did was sleep and cry. My family bent over backwards to help me. My husband rearranged his work, my parents moved in with us to help, and my sister drove me to and from appointments. Nothing worked.
After I made another attempt to stop traditional medicine, my doctor started me on a once-a-month infusion of an IL-6 inhibitor. After 2 treatments, my pain significantly decreased. Within 6 months, I was virtually pain-free and had my life back. I have been on that medication for almost 10 years. My pain is still nearly nonexistent. I do struggle with fatigue, but a quick power nap gets me through.
I’m lucky to have found a treatment that works. One of the reasons I co-authored this paper is because I feel strongly that patients must be involved in decision-making about drug effectiveness and treatment every step of the way. My decision to have a child and choose an infusion-based therapy are important factors to consider in my treatment pathway. Unlike many others, I have a family to support me, and while I am grateful, the costs to my family beyond traditional healthcare costs are significant. These are all considerations that need to be part of research that evaluates the effectiveness of healthcare treatments.
This new report and my experience reveal that it is not enough to only look at changes in symptoms, but at the full complexity of living with RA, including costs beyond co-payments, living independently, and the impact on family. Some of the more significant recommendations from the report suggest:
It is vital for patients to understand their treatment options and participate in shared decision-making with their doctors. Every patient is unique, with different treatment goals and desired outcomes. It is up to us, the patients, to change the future of RA treatment – because it starts and ends with us.
About the Author
Stacy Courtnay is the community network chair for the Arthritis Foundation in Atlanta, GA.