Fred
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Fred first noticed something felt off in his late 40s when he had tingling in his arms after driving a long distance and numbness in his hands while coaching volleyball. A year later, Fred was diagnosed with MS at 49 years old. He traveled an hour and a half to participate in two clinical trials for MS medications. Shortly after his diagnosis, Fred decided to look for a clinical trial because he “wanted a pill” instead of injections and thought “I’m pretty healthy, I should be able to do this.” Fred remembers the long consent process being “almost as bad” as when he was in the Army, when he had to “get signed out” by all the places he had visited. In the first trial, the doctors told Fred, “We're going to have pull you off this” because of his liver test results. His doctors introduced a second trial - a daily shot of Tecfidera for two years, followed by Copaxone for two years and then an extended trial of Tecfidera pills for eight years. When Fred was on the trial, he liked how the people involved “know that you're giving something to them, and they appreciate your time, so they try to make it as nice as possible for you.” To people who might be considering a trial, Fred says “if it's easy enough for you to get there, if it's something you can do time commitment wise, I think helping people is a good idea.”
Fred describes how clinical trials have specific requirements.
Fred describes how clinical trials have specific requirements.
How do you kind of think about-- it seems like a lot of your treatment you've gotten through these clinical trials. How do you think about the difference between a clinical trial and your regular care that you get with your neurologist?
Well, the clinical trials, it was pretty straightforward, and you had to do it exactly the same every time. So, like there was one big snowstorm the one time when I was supposed to go up there, and I said, can I get it done here? They said, wish you could but you can't. You have to come up here, we have to draw it in our special tubes and then we package it up and mail it to a specific lab. That's it, it can't be done any other way. So, in that regard, it's different. Whereas your private care, if there was something happens, sometimes they'll make arrangements. Oh, yeah, you can go to the clinic just up the street from you and get it drawn and we'll get it from there. That would be the biggest difference, I think, because the labs, in particular, have to be done exactly the same. They don't want any difference.
Joining a medication trial for a pill rather than an injection appealed to Fred.
Joining a medication trial for a pill rather than an injection appealed to Fred.
How did you kind of make decisions about which treatments you were going to look at next?
It was mostly I wanted a pill. That was really the driving force. I didn't want to do a shot all the time, and that was the only treatments for MS. So, I wanted to get on a clinical trial that had pills. That was really the driving force, that's what I wanted.
Fred says the consent form was for his trial “was huge.”
Fred says the consent form was for his trial “was huge.”
So, the consent form was like 50 pages long. Ok, this consent form for this thing. It was huge. It was huge. We probably did eight of them. Every couple of years, oh, we had to take these two lines out, stuff like that. So, I had to sign in like six or eight places, and initial and date every page. So, listen then, I bet it's eight of them. I've got most of them, so I kept them. I have them in a stack just there. But it's almost as bad as when I was in the army. It was terrible. In the army, flew over to Germany. When I go to leave Germany, you have to get signed out by every place you could have gone to in the army…. It was like, oh my gosh, what do you need so much paperwork? So, when I got the first couple of consent forms, oh yeah, it's like the army.
Fred recalls asking the clinical trial team to increase reimbursement.
Fred recalls asking the clinical trial team to increase reimbursement.
Oh, yeah, I brought it up a couple of times. Said, “Can't we bump this from 50 to 100 or something so I can get some money, instead of just paying it all for gas?” They said, “No, no,” but we think a bump’s coming pretty soon, and it did, it went to 75, so that helped with it. Yeah, I did mention a few times, I said, that's probably why my heart rate's up a little bit, that's probably why this and that.
Fred was disappointed that neither individual nor overall study results were shared.
Fred was disappointed that neither individual nor overall study results were shared.
Have you gotten any results back from the clinical trials or other information?
No, I don't know. And they kind of said, I think in the last consent form, that I wouldn't necessarily get anything back from them as far as that. That was their information, they use it the way they saw fit. It's not that they'd exclude me on purpose, but they just never came. They made it pretty clear that I wouldn't necessarily get anything from them. I know because it would have been nice to have gotten the last MRI copies or whatever. I could have given it to when they had to do one here because I did one right before it. It was a shame.