My (Almost) Clinical Trial Experience
Last updated: July 2023
For the past few years, my lungs have been in a place that many doctors consider to be medically mysterious. I had tried every single asthma medication on the market, numerous off-label treatments, and even a few that were indicated in other diseases. Needless to say, nothing was really that effective.
It was at this point that I began doing my own research about clinical trials. Being in the STEM fields myself, I was previously familiar with the purpose of, format, requirements, etc. involved in clinical trials, but I had never been given real information on it. Everything I knew was self-taught and everything I pursued was independently initiated.
Searching for a clinical trial for my asthma
I discovered quickly how challenging it was to find a clinical trial based on location. I also became immediately aware that clinical trials can require immense privilege; living in the Midwest like I do (unless you are close to a major academic/research institution) can be a travel impediment. I also struggled to find a severe asthma clinical trial, particularly one I would qualify for. Living with other diagnoses and chronic illnesses, I tend to be precluded from a trial before I even talk to the Primary Investigator (PI).
Lo and behold, I stumbled upon a national trial for severe asthma that happened to have a center less than 2 hours away from me. I completed an initial intake virtually with the primary site and got connected to the local site. I started another intake at the closer site, and I quickly found out that I was indeed not a candidate, much like every other trial I had looked into.
The funny part about my ineligibility for this trial is how I was rejected from the study because my asthma was too severe. Ironic much? I was extremely disappointed; I figured clinical trials were for the worst of the worst, but I discovered there is an entirely separate category of patients who are outside the scope of the trial because of their immense severity. I was crushed. This felt like my last chance to find a potential treatment, and it quickly disappeared.
I continued checking in with this center every few months as I tried my best to stay out of the hospital, get down/off of prednisone, and overall be "less severe" in an attempt to get in the trial. I never reached that point until just about 3 weeks ago, but now I am working with the same center and researchers on different projects - on the research side! - and would find it uncomfortable and/or a potential conflict of interest if I suddenly became one of their/my own study subject.
My thoughts if you are searching
When looking into clinical trials, I have a few pieces of information to keep in mind:
- Clinical trials are a considerable time commitment. Even if they provide compensation, they cannot pay you back in extra time. Another significant reason why I am not still pursuing a trial right now is this reason - I do not exactly have hours and hours each month to spare while I am a full time undergraduate student.
- Compensation may/may not be included. Some trials are based on the goodness of your heart (and are sometimes more ethical that way by avoiding pressure from compensation) but others will pay you. Regardless, no one is going to get rich off of a clinical trial.
- There may be other requirements for your life to add controls in the study. For example, many trials that include women of reproductive age require effective birth control methods in order to be a study subject.
- You may not benefit directly yourself. The whole purpose of clinical trials is to advance treatment options in the future, so they may not be exceptionally helpful now. Even if you find a clinical trial medicine that works for you, it is often not guaranteed that you can continue the treatment while out of the study.
Even though I was not a candidate for this specific trial, I would absolutely consider pursuing one in the future. I have a different perspective than many others since I am in involved in other research myself and generally love science, but overall I think clinical trials can be a great experience and exceptionally beneficial to other individuals suffering with the same illnesses.
How often do you experience a shortage in your asthma medication?