I always find that when a clinical trial that I have participated in ends, that it is somewhat bittersweet. In some respects, I don’t miss the many appointments, juggling my schedule, or the lengthy commute to get to the research center and sometimes the overzealous monitoring. That being said, I miss not only the drug which ended up being really beneficial for me but also the connection to research. I have always had great care but I now have to get back in line for appointments in the clinic.
Closer access to doctors?
In my experience, when you are a part of the research, you get slightly closer access to your doctor. It is important to know that this may not be everyone’s experience but it certainly was mine. I guess that I also have a fear of missing out (FOMO). For such a long time, I had to be my own advocate and fight for what I wanted, almost like a badge of honor. I know that this sounds a bit silly, but it is almost like I am not being proactive which is not true.
New times in asthma research and treatment
The truth is that these are different times in the asthma treatment and research. When I first started done this round of research about eight years ago, there was only one new to the market biologic and now there are four. I am not sure if I would have participated in research if there had been other options on the market. I would hope that I would have, but honestly, I don’t know. I can say that I am especially grateful for those that have participated and laid that pathway for me.
What it means to be a part of a clinical trial
Finishing a clinical trial is rather anticlimactic. Nothing special, no stickers. I have certainly been thanked for my participation and received the inside scoop on where the research is headed. The experience is a bit sterile but not cold. In general, study appointments are incredible monitored and very regimented. You finish up the last of your study appointments and usually book a post-study follow up appointment. I think I was more nervous about the post-study appointment. I had so many questions, how long would I feel well for? Would my symptoms return? When was the drug going to be approved? When would it come to market? How much would it cost?
In my experience, the return to the standard of care was what was available to me, since the drug that I received was not yet approved. I discussed the potential of trying another biologic till it comes to market. It was following up in the clinic which was easy and making a monitoring plan for the future.
I really think participating in studies have made me a more resilient and persistent patient. Have you been interested or participated in clinical studies? I would love to hear about your experience.