Mia
See full story
In her mid 40s, Mia began to experience “full-on vertigo,” constant vomiting, and an inability to walk. After a hospital visit, Mia realized that she had every single symptom of MS except for sexual dysfunction. Six weeks later, she got an MRI and was diagnosed with MS. Feeling like there was nothing to lose, Mia started participating in a clinical trial on movement and cognition that was supposed to pay two hundred and fifty dollars for participation. During this clinical trial, they measured how far she could walk, and they gave her a game to test cognition. Unfortunately, Mia was never financially compensated for her time in the study.
She did another clinical trial on fatigue medicine for MS. The study was double-blinded, and she was told which medicines to take according to a given schedule. This medication study lasted for nine months but Mia never found out what was working for her because they never disclosed to her what she was taking. Mia and her treatment team felt that information was very important for her doctors to know, but she still does not know what medication she received. Her advice to patients is to “do the research and be choosy” in terms of clinical trial participation. Her advice for those running clinical trials is to focus on patient reported outcomes and patient panels for drug trials “because we know so much more than they do about MS and about our symptoms”.
Mia also participated in a CALMS study that focused on communication. By doing homework assignments and talking to someone about understanding MS, the study aimed to help people come to terms with their MS diagnosis. Her participation in the CALMS study had the added positive benefit of helping Mia work through her denial and anger surrounding her mother’s passing. Mia is currently part of a primary progressive patient panel for the development of a new primary progressive MS drug. Her main motivation for participating in clinical trials is being of service to her community. She feels that patients are the best people to give information. She also feels that by participating “we’re only helping ourselves.”
Mia was frustrated that she never found out what group she was assigned.
Mia was frustrated that she never found out what group she was assigned.
Well, at the end of it-- it lasted for nine months. And at the end of it, I never even found out what was working for me. Because they never even told me what I was taking. And I made kind of a big deal about it to [INSTITUTION] and to the big pharma company that was sponsoring it that I wanted it in my medical chart, what I took. Because that's very important for my doctors to know. And no, they didn't get that either. And I still don't know what I took or anything.
But unless I'm sitting right there-- that study was-- because I just never knew. And I thought that was really frustrating, still not knowing. Was it the placebo? Because it didn't always make-- when you go on and off medications like that, they would always give you-- there would be a two-week period in between. You did the red and the blue bottle for two weeks and then for two weeks you wouldn't do anything, so you could get it all out of your system before you start another one.
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.
Mia didn’t get information back after her trial.
Mia didn’t get information back after her trial.
And then when I went back for the medication study for the fatigue, they wouldn't even give up the medical data that needed to go in my chart. And I wasn't even on the study anymore, and even signed up for this thing to do part of a group to tell us what we took. They didn't do that either. I don't know. So those things—I don't tend towards [INSTITUTION] studies anymore.
Mia describes how she would take the medications in her trial.
Mia describes how she would take the medications in her trial.
They'd send you every—because it was two weeks per segment or whatever. They gave you an A pill bottle, and a B bottle. And they're red and blue, you know what I mean. So, then they say, “Take one red one in the morning and then take two blue ones.” Or, “Take one blue one or two red ones.” They'd switch it up all the time, but they would tell me what to take. And then I'd have to answer a survey, a questionnaire.
Because it didn't always make-- when you go on and off medications like that, they would always give you-- there would be a two-week period in between. You did the red and the blue bottle for two weeks and then for two weeks you wouldn't do anything, so you could get it all out of your system before you start another one.
Mia did not feel that members of her clinical trial team were always “on the same page.”
Mia did not feel that members of her clinical trial team were always “on the same page.”
And after I went in that second time, and the guy never got back in touch with me to do the final on the study or anything. When I went back to do the medication study for fatigue, I went back to [INSTITUTION]. And I'm like, well, [NAME] is the one who was head of this study. And she's like, “Oh, he's here.” And he comes out, and he's like, “Oh, I just didn't hear from you.” I'm like, “Yeah, because you didn't write me back.” And I just felt like it was too many loose ends, you know what I mean. And I'm not a doctor so I don't know what it takes for you to get together a study and everybody to be on the same page. And it seems like it's a large group of people. Not all the time, just like these people in the room kind of thing.
Mia advocates for trials to focus on patient-reported outcomes (PROs).
Mia advocates for trials to focus on patient-reported outcomes (PROs).
For doctors, I think the patient reported outcomes should be the point. That's the only way you're getting your information; to know if what you're trying to do is working. There's all different types of patient related outcomes. They do the surveys, or they want you to walk distances, or they want you to do a game or something that they are able to gauge if that's working on you. So, I think questionnaires and surveys and stuff, and the PROs are so important. And if it's a drug trial, for sure a patient panel. Because we know so much more than they do about MS and about our symptoms and everything.