Michael, Richard and Ernie, three participants in gout clinical trials, share personal views on their experiences.
We wanted to get the inside scoop of what it’s like to be part of a clinical trial, what encouraged these volunteers to participate, and how their views were altered by participating in trials. We sat down individually with these three gentlemen and quizzed them about their experiences, motivations, and results. Although they differ in personal lifestyles, views, and outcomes, their experiences seem to have all been positive.
Richard is a single father and a cameraman for a prestigious television station. He spends much of his spare time (the little that he has) riding motorcycles and taking photographs. Ernie is a successful businessman, and Michael is a business owner, who is also an avid skier. All three have been afflicted by gout for several years, and it is easy to see how its debilitating symptoms can interfere with their lives:
Michael: “I have my own business and to be off work for a week, still answering the phone and having all the work back up sucks. And then when you do feel better, it’s like coming back from holiday with no holiday.” He also adds: “I’m active, and I’m an aggressive skier, and I couldn’t ski very much last year.”
Ernie:”Gout is a very painful affliction. It tends to come from nowhere, so it’s not like you feel it coming on and you can take a pill to get rid of it like a headache, you know? When it comes, it comes, and it’s very painful. “
“Richard: I had just gone through a gout attack and I would say that it was a severe one. I was not on bed rest, but I was staying at home. I couldn’t work for about one month and I was taking my pills.”
When asked what motivated them to enroll in the trial, Richard gives a simple and concise answer: “it was gout.” The simplicity and lack of elaboration shows the severity of the impact this condition can have on a person’s life. Michael elaborates, giving some insight into his suffering:
“In the last couple of years, it’s gotten from a minor inconvenience of a sore toe and limping, to being in bed for the day or a few days. It started to effect work, so that’s primarily the reason that I came in and started researching clinical trials for gout.”
Ernie took a logical approach: “Gout unfortunately was very painful to me. So, rather than sit there for four or five hours and try to double up or triple up on medications to see if that would help, go to a clinic. I thought, nothing ventured, nothing gained. “
In addition to being fed up of living in pain and being incapacitated for weeks at a time, the participants were also motivated by feeling that their treatments were inadequate, and the hope of finding something new that works for them.
M: “The medication I was on before was working, but it was very reactive and it was sporadic. I wasn’t on it all the time, only during flare-ups. It would take longer to subside when you had an attack – it would take days and weeks to get rid of it. It wasn’t effective.”
R: “I was very excited to learn about this trial. This is mainly because I haven’t heard a lot about treatments for gout; it was the first time I came across something that could potentially treat gout.”
Above everything else, we were very curious to find out if participating in the trials benefited them and their conditions. There was agreement over the fact that the compensation provided was not in fact a motivating factor, but was appreciated (especially considering soaring gas prices, and a couple lengthy clinic visits). Fortunately, they all seemed to have positive results, attitudes, and experiences. It should also be taken into consideration that half of all participants in this type of trial are randomly placed into a control group (a control group is a group of trial participants who do not receive treatment so as to observe the effectiveness of a given medication), so it is possible that not all three of our interviewees were receiving the investigational medication, but actually experienced a placebo effect (when a patient feels as if treatment is working, but has not actually been given a therapeutic drug).
M: “Anytime you’re doing something and you’re having some success, but there’s room for improvement, you have to be open to it. The benefits are huge – a lifestyle change. Before, I never knew what my uric acid level was. Now, I can tell you within a couple of decimal points. I’m educated, and I know more about my condition, which has improved and has been consistently getting better as my uric acid level continues to drop. “
R: “My condition couldn’t be any worse than it already was. I had nothing to lose. Since I enrolled, I haven’t had any flare-ups and I haven’t had any pain.”
E: ”I was going to my doctor and was prescribed medication, but I would still have three of four flare-ups a year. I think I had one flare-up in the entire time that I’ve been in the program, compared to three or four. Being in this program has certainly helped my ability to fend off attacks and improved my quality of life overall.”
Lastly, we thought it beneficial to have these now experienced participants share their pearls of wisdom. Similar to choosing where to book a vacation or which new restaurant to try out, reviews from those who have personal experience with the venue or voyage can be a big help in the decision making process. Our interviewees had the following to say to those considering enrolling in a clinical trial:
R: “I can understand how crucial it is for the medical research companies to evolve in finding new treatments, new medicine. I think everybody is different, and that research for developing new medicine that can help a broader range of people is so important.”
E: ”I guess everybody has certain preconceived notions as to what clinical trials are. You see all the things in the media and certainly they don’t play up the positive side. It’s all fear of the unknown. So I didn’t know if I was going to wind up with three feet or a tail or something. But it has certainly given me a much more positive outlook on what can be achieved through clinical trials. People should have confidence and realize that what’s holding them back may be the fear of the unknown. As long as you follow the directions given, ideally there should be something positive to come out with.”
M: “If you had an incurable cancer, would you not seek specialists and exploratory techniques? Of course you would, you’d go outside the norm and try new things. The forms that I signed – I read all of it. You can back out any time you want; you don’t have to answer a question if it’s uncomfortable or for any reason you don’t want to. I can walk out of here today and there’s no obligation to come back again. I do it because I benefit. I would highly recommend it. If people are apprehensive, the key is: you’re not obligated and can walk away at any point.”
These three participants give us a glimpse into the experiences, emotions and thoughts that clinical trial volunteers may have. It is important for experienced participants to voice their opinions and share their experiences with others in order to spread information, warning signs, and set reasonable expectations. Doing this will help answer questions for those contemplating participating in a research study, as well as give them an idea of what the process of clinical trials entails.
Some words of kindness:
“E: They’ve been very accommodating when I’ve had to change my appointments. They’ve been more than accommodating. The clinic has a lot of great people.”
“R: The only inconvenience was for the clinic because I had to work early, so they had to come in early for me.”
“M: The entire time, they did exactly what they said they’re going to. The staff is friendly, the research assistants are great, and the nurse is terrific.”