My Clinical Trial Experience
Some may not be familiar with clinical trials. I know for myself, I was not quite certain as to what it entailed. I had the ‘stigma’ of trials as to the old monkeys, rats etc. with bubbling test tubes and smoke coming out of them along with a scientist with matted hair. I had no idea all that really went into the science of a medication before it left the laboratory. Then after that point, they start their testing with humans.
My chance at a cure
After failing treatment on then the ONLY possible chance for a cure on the older meds (interferon and ribavirin), I was desperate to try anything to save my life. I grew up in a family that was considered part of research anyway. My mom was first kidney transplant patient to give birth when she gave birth to me. Therefore, labeling me as ‘research’ my whole life. I know the importance of being in a trial, as it gives much-needed information to scientists trying their best to find cures to diseases. Without those that participate we would have no medicine, no cures, therefore, no extensions of life for those fighting life-threatening diseases and health conditions.
Going screened for a clinical trial can be a long process, just because you show up to volunteer does NOT guarantee you will be accepted to be on one. I learned this the hard way. Countless blood draws, CT scans, endoscopies, urine samples, EKGs, medical history, staging of diagnosis — you name it, I had to do it. And I repeated it all for the chance on a second trial as well. It seemed like I would clear one hoop (figure of speech) and another would appear. I just kept jumping until I got what I wanted.
Finding the right clinical trial
After not being accepted into two prior trials because I did not meet the required criteria, I was wondering if I ever would qualify. I was frantic, time was ticking for me. Then with the help of my Trial Nurse Coordinator, I finally get accepted on a trial my 3rd try. I went into that office all excited and then learned I received the placebo right out of the gate. That meant I did not get the ‘actual’ treatment pill and still had to go in every week, every month for 26 weeks as if I were on the treatment. I was told that after that initial period I would then get the actual pill and begin treatment.
Feeling like I won the lottery
I began my clinical trial Nov. 6th, 2013. It was a 48-week trial on two medications. I was to report the first week three times for blood draws, then twice a month, and eventually once a month for the 48-week period. I went in starting with a viral load of 17,000,000 and within three days it dropped to 725, in five days it dropped to 124, and by day seven on the trial I was UNDETECTED. Oh my gosh, you can’t imagine the emotions I was feeling that day. I had just gotten what I thought was the lifetime lottery. I WAS UNDETECTED. Meaning the virus was no longer attacking my liver. This trial medication was working. I was on the medication and undetected for the remaining 47 weeks.
The trial I was in was for those with stage 4 cirrhotic livers. I knew that those of us in the trial were coming into it at this late stage and were betting on the chance to actually survive this disease. We had no other choices. We had all tried and failed all of the previous older treatments.
Joy and gratitude
I am so grateful to my doctor and my nurse coordinator for guiding me and fighting for me to be in this trial. There will never be a day that goes by that I will not think of them and all they have given me.