Debra N
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Debra N. first experienced vision changed in college, which her doctor attributed to likely depression. A year later, when she was 45, Debra decided that if she had “definitive answers, it would be better” and returned to see a neurologist, who quickly diagnosed her with MS. When Debra received her diagnosis, there was no medication available. She decided to participate in a clinical trial that lasted 10 years. Debra traveled a long distance to participate in the trial. She was interested in participating because she “didn’t want to do shots” or “pay all that big money” for medications. Participating in a clinical trial was a “good deal. It’s like a twofer.” Though some people in the trial dropped out, Debra stayed on the trial for the duration because she is “one of those people who like to finish things up.” For Debra making it to the end of the trial meant she “met another goal.” After the trial ended, Debra continued on the medication from the trial. Though she had insurance through her employer, Debra felt “incredible guilty because it’s one of those high tier drugs”; she is someone who is “always looking for a way to ease the cost of everything.”
Debra hopes that the information gathered in the trial is helpful and useful to other people. Debra advises people considering participation in clinical trials to “
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.
Debra N. was not able to use her trial-related tests for her usual care.
Debra N. was not able to use her trial-related tests for her usual care.
No. That was part of the thing that I signed up for in the beginning is that they did not have that for you because I know at one point getting an MRI, you know laying in the box and having them take pictures of your brain was part of the study. And that, of course, took a whole day and trying to schedule for all of that. I know when I first flopped over to regular health care, I'm like, “Well, can't you just use that one?” “No, you can't. Biogen owns that, and we don't have those.” They had to go all the way back to my original MRI to get any kind of pictures of all of the stuff on my brain. I'm like, OK, that would have been nice if they had given me one of those but whatever. It didn't work so.