Jim
See full story
When Jim first went to the doctor with concerns about his speech and energy levels, his doctor dismissed his symptoms. Feeling “really stupid” and “self-conscious about being labeled with a negative label” like “hypochondriac,” Jim didn’t go back to this doctor. A good relationship with a new doctor made a “huge difference” for Jim: “feeling trusted is just a big deal.” Jim was diagnosed with MS in his late 30s. Though this doctor diagnosed Jim with relapsing-remitting MS, Jim thinks his MS would now be labeled secondary progressive as his symptoms have gradually worsened over time.
Soon after Jim was diagnosed with MS at 37, he signed up for a clinical trial. At this time, he felt scared and “didn’t know what else to do.” Jim also comes from a science background and decided participation in the clinical trial was a “good opportunity to put my money where my mouth was” as a strong advocate for research. The “new weird clinical trial” involved swallowing parasite eggs. Jim was one of 5 enrollees in the first phase. He appreciated the “great amount of medical attention that wasn't part of my insurance plan,” including the large amount of his personal health data from the trial that his physician was able to access. Jim also enjoyed being “part of something bigger for everybody else.” Different from his usual health care for his MS, Jim noticed “when you do clinical trials, a lot of the observations are much more formal” because of the protocols that need to be followed. As a biosafety engineer and member of IRB committees, Jim “understood why it has to happen the way it happens.” Jim is a strong advocate for clinic trials, presenting to groups of people living with MS where he answers questions about clinical trials “as a lay person with fairly strong scientific knowledge.”
Jim talks about his phase 1 trial.
Jim talks about his phase 1 trial.
It was not a safety trial, which is often times what phase 1 trials are, because they already knew, in healthy individuals, it was a fairly safe drug because it had been used in a different autoimmune disease. What they didn't know was whether or not it was going to make MS worse. And so, so I signed up for that.
There, you know, wasn't really a group-assignment thing here because it was, again, it was a weird trial, and it was a – it was a test run for a bigger trial. So, it was a phase 1a kind of thing, and so there wasn't a control group.
Jim describes being comforted by his clinical trial team.
Jim describes being comforted by his clinical trial team.
Plus, in the early days, you know like I said, when I was first diagnosed, I just, I was kind of terrified. I didn't know what was going on, and I hadn't really told anybody. And I was going to have this blood work done. And you know the people–the people that worked in the clinical trials, and the nurses, and everything else, they all knew what to say, what to do, how to talk to me, and stuff like that. So that was great. It was very comforting. I just always really appreciated that.
Jim describes his involvement in patient advocacy and research development.
Jim describes his involvement in patient advocacy and research development.
So, I just really do a lot of advocating. I do like—right now, I'm in the midst of—I mean last night at 11:00 PM central because midnight Eastern was a deadline for revised grants. I do grant reviews for the MS Society nationally through the Department of Defense. And so, I did that. I do that on a regular basis.
Jim says don’t worry about being in the control group.
Jim says don’t worry about being in the control group.
I didn’t really have a lot of worries about the clinical trial because I understood how they worked. So, I can tell you, though, that I know that a lot of people worry about them. And I know that because of discussions I’ve had with them in questions and answers, because like I said, I used to advocate for people to do clinical trials. You know people worry that they’re going to be—I think one of the main things is people worry that they’re going to be put in a control and not know it. If it’s testing a medicine, that they’re going to be put in—taken off their medicine and not know it, right, and so they’re going to get worse. But what I think–what I know people don’t understand and what I try to make clear to them is that that’s not ethical to do. You can’t do that. If it’s an FDA-approved treatment, if it’s a standard of care, you have to at least be on that. Right, we’re not comparing that versus nothing. We’re comparing this versus the standard of care. So, I always—you know, I think that’s one of the big concerns is people are going to be a control, and so, in their mind, that means that they’re going to be taking off my meds. Well, if your meds are prescribed to you and that’s you know whatever, it’s a standard of care, you’re not going to be taken off your meds. You might not know which one you’re getting, but you’re not going to be taken off of them.