Concerns about Participating
People we interviewed raised various concerns about being part of a clinical trial such as potential impacts on health, privacy, and logistics such as time, travel, and what it might take to withdraw from a trial. A number of people also talked about how their questions and concerns influenced the way they went about deciding whether or not to take part. Others spoke about how the legacy of racism in the United States influenced their feelings about clinical trials.
Kara's past experience with a clinical trial gave her concerns about joining another one.
Kara's past experience with a clinical trial gave her concerns about joining another one.
You said that when you were first diagnosed, medications was one of the things that you looked into. I’m wondering kind of what information you were, you were looking for, either then or as you made decisions after speaking with your neurologist?
The main thing is how long it’s been in a clinical trial, the side effects, and then what the treatment would be, how many times a month or a week. And then what kind of things that could potentially have like, side effects; not really side effects, but like things that I need to look for with my blood work, you know. Like the other one was my IGM levels were just chronically low, which means I bruise—I can bump into anything, I mean, I was covered in bruises because of that medicine. In the course with the clinical trials, if they’re able—how long, if I’m able to leave it or not, you know. If I would get penalized for leaving it, if I-, if it’s not doing very well, or just I don’t like it, that’s another thing. Because I don’t want to be stuck doing something if I have to be forced, if I’m miserable, and it’s making me worse. And I don’t want to, you know, have to go through any type of negativity with that brand or whatever.
Health Concerns
Concerns about safety, side effects or impact of the trial on health were common in our interviews. David R. was worried about the potential effect of trial medications on his blood sugar. Alejandro considered hardships related to required lumbar spine punctures and other risks before consenting to a study. Several people investigated safety issues; as Kara put it, it is important to make sure the trial is “safe for me, and I am the one to choose it.” Kelsey was wary “making a decision that could have impact on [her] disease course” which she “would probably be a little hesitant to put in the hands of a researcher.” Dani said she has “had drugs in the past that have very bad side effects and I don't have time for that along with my disability.” Tiffany similarly felt she “already take[s] so many medications, [she doesn’t] want any complications." Several people didn’t want to join trials that would require them to add new interventions or change their course of treatment because their health was currently stable.
Dani might consider a trial later, but had too many concerns to join when asked.
Dani might consider a trial later, but had too many concerns to join when asked.
Have you ever been offered a drug trial or had any interest in a drug trial? No? Why not?
I know, and I'm thankful for everyone who does it. And I do remember a couple of years ago worrying that if Tysabri stopped working for me, at that time there weren't a ton more. So, I was like would I have to go do one of those-- I called it an experiment in my head just now. And maybe that's the problem.
It's legit.
Yeah, yeah, and I'm just like, I have really bad luck. And I'd be the one to get the drug that turns you into a lizard. And I know that's ridiculous and dumb, but I really do. I really have random bad luck. So, I mean, maybe give me some more years, or give me some more symptoms, and I'll change my tune. But I just have not really had the calling.
But I think so if you were, it would be more of a last resort? Or because other things weren't working?
Yeah. Which is awful I'm realizing. But I'm just not-- I already have other comorbidities or whatever they call them. And I'm just, I can't-- I can't handle one more thing. I can't do it…
Unless that they can tell me that it's 50%--no, maybe 80% clear my MS, like, I won't have it. Other than that, I'm like, no. I've got my drugs that I use and so far, so good. I would hate to have a relapse and lose more of something, more of my brain, whatever happens up there. Especially if it's a placebo.
Nora worries about the unknown side effects of taking a new medication.
Nora worries about the unknown side effects of taking a new medication.
I'm, personally, me, I am more scared of the side effects than the actual medicine, the benefits of the medicine. So, I, most likely, would not go to a trial for a new medicine, because I don't know how it would impact me. So yeah. So, for me, I guess that's where I'm scared. I'm a scaredy cat. I want to do new things, natural stuff, but I wouldn't want a medicine that I don't know the side effects on. So that's for me.
A number of people said they would not be interested in any trials involving medications; as Dani put it, joining such a trial is “a scary thought.” Ann would only want to be in the placebo group of a medication trial – the group that did not receive the medication. Mia noted, “I don't like the drug studies. I will never do a drug study again." Karen says she is not interested in clinical trials “trying new drugs,” though she is “very grateful for the people” that have joined past trials which brought the medications she uses to market.
Concerns about Time, Money, and Travel
Many people we interviewed had concerns about time, money and travel. Liz worried that going for the infusions her trial involved might mean losing “an entire day” from work, and wondered if she would even need to take off the next day as well. Kaitlin turned down a trial that would mean traveling to another city, and Rhonda was also worried about travel.
Dina helps with research without needing compensation, as long as it’s not too inconvenient.
Dina helps with research without needing compensation, as long as it’s not too inconvenient.
Because I think research and science is really, really important, and even more important now that it is-- I want to be part of that process, regardless of compensation, as long as it's not too much inconvenience. You know, I wouldn't want to travel in and out of a major city and not be compensated. But as long as the study feels like it pertains to where I'm at and where I've been and where I see myself with my medication, I look to that as how is the research going to be helping?
Peggy declined to participate in a clinical trial because of missed work time.
Peggy declined to participate in a clinical trial because of missed work time.
I was, yes, back in this last fall. I declined it. It was, even though I’m OK with going to [ACADEMIC INST], the first part of the trial you’d have to go there like every week, and I just couldn't do that work-wise. And I mean, I do have enough sick time at work, but I need that time for reconstruction, because I'll be off a lot longer. So I just and there was no guarantee that it would help. So I was just like, no, I'm good with what the doctors have suggested. So.
Uncertainty
Many people emphasized worries about uncertainty; Liz for example said, the “worst part about any study is you kind of feel like you're signing your life away, because you're not sure.” Sharonda said trials are scary because “they are so unknown.” Leah and Ron wondered, “what if the study [our child is offered] didn’t work? And what if, what if, what if?” Jennifer decided to “just stick to the course of action in front of us” rather than join a trial “that we didn’t even know what we were getting into and what that looked like.” Alison and Matt didn’t want their child to be put randomly into one or another study group but understand that “you can’t be the person that says you’ll do it and then when you don’t get the category you like, you back out, because then the study doesn’t give accurate results.”
Makenzie didn’t want to join a trial because “there was too much unknown.”
Makenzie didn’t want to join a trial because “there was too much unknown.”
So I guess I just didn't want to try a med and then have it progress so bad. I feel like if I was off a med and tried a new one that I didn't know would work, it made me nervous. And I have a lot of lesions on my brain, like over 90. And I just, I didn't want that to keep going. So I've had those since I was diagnosed, but, I just didn't want it to progress. I-, there was too much unknown, I guess, for me. I'm just very nervous. I'm a nervous person. So I'm just, yeah, I didn't want to do it, so.
Jennifer did not want to deal with the uncertainty of a clinical trial.
Jennifer did not want to deal with the uncertainty of a clinical trial.
Do you recall if you were offered the opportunity to take part in any clinical trials?
Yes.
And did you?
No.
And could you maybe tell me a little bit about your thoughts on why you decided not to?
So we decided not to for the simple fact that we didn’t even know what we were getting into and what that looked like. So then, to think about well, we’re going to do this trial of this--for me, it was just a no brainer. Nope. We’re just going to stick to the course of action in front of us, complete that, and go for it.
Racism and Mistrust
A few people spoke about distrust of clinical trials in Black communities because of historical abuses in medical research.
Dani talks about not trusting trials because of how Black people have historically been treated in medical research.
Dani talks about not trusting trials because of how Black people have historically been treated in medical research.
Why is being on a drug study not interesting to you?
Well, I mean, so my mom made me read lots of Black books growing up. And I have to say, I think that plays a part of this like, they gave us some not fun drugs, Black people, in the old days. So, I mean, not that anyone would sabotage and give me weird drugs and then not tell me I had syphilis and not treat me. But I guess I'm not that trusting and I'm just like, I already have this dumb disease. Please just give me the best medications that's already been proven. I can't-- I mean, I guess if was dying I'd take an experimental drug, but we're not there yet.
Mercedes says many African Americans won’t participate, but chose to do so herself.
Mercedes says many African Americans won’t participate, but chose to do so herself.
You know many — there's kind of a stereotype you know that a lot of — not even a stereotype, I think it's factual, that many African Americans don't elect to participate in studies and clinical trials or et cetera. And like I said, that goes back to the Tuskegee Experiment. So, you know it's—it’s true. But at the same time, if you have faith and, you know, you have trust in the physicians or the individuals who are conducting the experiment, and you've read everything and you're knowledgeable about what the outcomes or proposed outcomes should be or will be, then there should be no fear. And so, like I said, I want to help as many people as I can so that's why I elected to do it as well.