Money, Time, and Support
Scheduling and Attending Appointments
Peoples’ experiences in clinical trials often involved scheduling many visits for treatments and tests. As Mercedes put it, she “participate[d] by going to appointments.” Rochelle was frustrated trying to schedule visits because the clinical trial team wasn’t clear about what appointment times were available. For Debbie, not having many options for appointment times led to always worrying about the possibility of missing one if she woke up not feeling well. Many trials involved schedules set in advance: Mia liked having a set schedule, as she did in one trial, and was less happy in a second trial where “it didn’t seem like they're sticking to a timeline really.” When David S. traveled to another state for his stem cell transplant clinical trial, he “did all the things in a row” rather than breaking up the visits over a longer time period. Elena similarly flew to another state for trial treatments and wanted to “get in and get out” so went straight from appointments back to the airport.
Kara scheduled her infusions so that she could go to work in the afternoon.
Kara scheduled her infusions so that she could go to work in the afternoon.
I would do them early in the morning. My appointments would be early, and then I would go—sometimes I would go to work after, sometimes I wouldn’t. It just kind of depended on how I was feeling. But for the first, I think two, I—I just took off for the whole day. But it sucked, I mean you had to sit there the whole time, you know, for hours. I think the first day was like six hours. And because of, you know, the first dose of med, they have to make sure you don’t—you take Benadryl and Tylenol and all of this other—like, Tylenol and Claritin was for this current medicine. It’s intense, and so—but once I got used to it, I would go, just to have the appointments early and go to work and work my eight hours, you know. That way, like, one to nine or something like that.
Debra N. got used to the routine of the trial visits.
Debra N. got used to the routine of the trial visits.
I made it another four years where I just have to go in and have my blood and pee and do all of that. And it's not necessarily fun, but I was used to the routine.
What was kind of involved in this 10-year clinical trial? So, you were on the Tecfidera as part of the trial. Were there other sort of procedures that you did or other things?
Just the three months. Go in. Have the urine test, the blood test. Fill out all the little questionnaires on how you're feeling that kind of stuff. “Are you depressed?” And I'm just like, not yet. Keep with some of this stuff. But, no, again, as I said, it's something I had to complete. It was on my checklist. Go take care of this. It's done.
Visits with the clinical trial team are not always the same length of time or frequency for the whole study. Fred said he went four times a year, but “two of the times, I’d only be in there for 20 minutes.” Fred’s visits were longer when he needed to wait to see the doctor or if they included procedures that took a long time, like MRIs. Alejandro had a longer visit with lots of tests to start before he got the first dose of the medication. Debra N. recalls needing to schedule “a whole day” for one of the tests she had and Mercedes’s appointments sometimes lasted half a day.
Compensation and Commitment
People we spoke with had a range of experiences with compensation for their participation in clinical trials. Some participants said that they were not paid at all or were given small amounts of cash or gifts as tokens of appreciation. Others said that they were reimbursed for gas, parking, and other costs related to traveling to a clinical trial site. People made distinctions between tokens of appreciation, reimbursement, and “real money,” as Mia called the compensation she received in one of the trials she participated in.
People we interviewed appreciated being reimbursed for clinical trial participation. At the same time, many also said what they received did not cover the physical impact and extended disruption to daily life clinical trial visits caused. Kara found her hours-long trials visits very tiring and unnecessary when nothing with her physical status had changed. Not being compensated enough for trial participation could be especially problematic for people with few other sources of income. Some trials provided people something tangible to retain, while others did not; Jennifer A. was very happy that she got to keep the yoga mat that was provided during a trial, whereas Kelsey was irritated that she had to return the smart watch that she had been using.
Alejandro talks about how the trial covered his cab ride.
Alejandro talks about how the trial covered his cab ride.
I mean, in this case, I prefer not to drive because I'm still driving. And I have no problems with driving, but because I'm getting fatigued throughout this procedure, and especially for the lumbar puncture, but also for the MRI, I'd rather not have to drive after I'm done. So that does mean having to pay for the cab. So, in that case, that's something they cover.
Rhonda says the money she received did not offset her costs.
Rhonda says the money she received did not offset her costs.
The first one I did it was four trips, and that money added up, so I kind of needed it to pay for the transportation. It wasn't really enough to pay because I'd have to pay paratransit. Then I'd have to pay another service to get there. And it was like a 16-hour day because even if it's only four hours in the lab, I still have to wait for another bus to come and pick me up because of what it is. It's kind of like a paratransit travel bus. It goes all over the place dropping people off for medical appointments in the city. So, it's a 16-hour day. So, I go through that for four hours, and sometimes I have to wait for eight hours. So, you got to pay for food, then you got to pay your way back home. So, it adds up. And a lot of times, the money they pay you doesn't always cover getting there. And I'm lucky I didn't have to pay for parking because parking was like $30 an hour. It's crazy. Yeah. The one I gave the money back to—donated it back, I only had one visit, and I was in a better place financially than I had been in years past. So, I felt that it was important to donate that back because I didn't need it.
Mia says she never received the compensation she was promised in one of the trials she was in.
Mia says she never received the compensation she was promised in one of the trials she was in.
And it was supposed to pay me $250. And I was like, “What? $250?” Because I don't work. I've not been able to work since December of 2017. And I'm still waiting on my SSI decision. So, I got all excited about money. I love money. And then it just didn't work out. It was the strangest thing, because they totally dropped the ball. And I thought it was me. I'm like, “Am I doing something wrong?” No, the coordinator of that study just totally dropped the ball. And, I never got paid for any of it. And I'm like, “What?” I gave them the game back. Anyway, so I just—whatever. Never even got paid for that. So, then I just kept moving on.
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.
People talked about studies that involved commitments from a few months to several years. The intensity of study procedures and frequency of study visits ranged from 2-3 visits over the course of a year to daily procedures and regular monitoring visits. For people with disabilities, effects on daily life could be considerable. For those who lived far from the study site, participating in the trial sometimes meant taking multiple days off work as well as travel, including flights and overnight stays in hotels. The need to miss work in order to join a trial was major a factor for some people when deciding whether or not to participate.
Susan had to make sure she could take off work to attend study visits.
Susan had to make sure she could take off work to attend study visits.
He just told me about it when I had to go– once a month, I had to go down to [LOCATION] which was quite a commitment. Because, like I said, I'm an hour and 15 minutes away from [LOCATION], so that means I take off of work once a month to go down there. It takes me, you know, a while to get down, a while to have the– the session and then come back. So I had to make sure that at work I could take off, and they were fine with that.
Jennifer A. considered the nature of the trial and how complicated the procedures would be when deciding to participate.
Jennifer A. considered the nature of the trial and how complicated the procedures would be when deciding to participate.
I will say, I think that was a learning curve. I think I was just excited after doing the first one, with the mental health one, that I was like, "Oh, intermittent fasting. That doesn't sound like a big deal." And it did make me appreciate that not all clinical trials are created equal. Some will have a lot more of a mental and physical time commitment than others. So, I do think that was a lessons learned, for me, is maybe paying more attention to what exactly that means, instead of just idealistically thinking, "Oh, it's just changing your eating.” Not really thinking, “Do you actually want to stop all calorie intakes at 7:00 PM every night?”
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.
Support From Family and Friends
Several people talked about enlisting the help of family members (especially spouses), friends, and colleagues to help them navigate day-to-day logistics of clinical trial visits. A few people who lived far from the clinical trial site described friends and family keeping them company on long or stressful commutes. Rochelle spoke about how bringing family members to study visits helped make her less worried about the trial.
Mercedes planned fun activities with her friends around study visits.
Mercedes planned fun activities with her friends around study visits.
They just wanted to know when I had to go. Or if I needed someone to come with me or what have you. Or could we make a day of it? Should we go shopping? Should we plan, whatever. So, it really didn't interfere with my life too much. It was just that I was in a study. And that's it. Part of my life.
Susan’s husband came with her to study visits.
Susan’s husband came with her to study visits.
My husband and I would go together, so we got used to what time to go, where to go, and we know which way to go. And we got loaded around a couple of times because
[LOCATION] always changes their– remodels and changes their things. We moved from basement to basement, to the next floor to the next floor, but it was fine. I mean, we knew where to go, what to do. We knew the protocol, so it was just like something you get into– it's just– it’s just a long commute back and forth, and especially if you're going to do it in the wintertime when it's snowing, you know, but we managed. It was OK.