Clinical Trials

Alejandro

Outline: Alejandro was diagnosed with MS after experiencing mobility issues with his knee and foot. Alejandro participated in several clinical trials and enjoyed both the opportunity to slow the progression of his disease and hopefully help others get better too.
Background: Alejandro, age 44, is a husband, a proud father of two daughters, and a lawyer. Alejandro identifies as a heterosexual Hispanic or Latino man.

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After turning 40 years old, getting married, and having his first child, Alejandro experienced some weakness in his knees and difficulty walking comfortably in his slippers. For a year after, Alejandro started to trip more frequently and decided to go to his doctor for what he thought was a knee problem. After physical therapy, at 41 years old, Alejandro was referred to a neurologist and an MRI confirmed a diagnosis of MS. Alejandro’s first clinical trial experience was focused on gut health. In this trial, he took a daily probiotic and researchers observed changes in his gut health. He is currently involved in a clinical trial testing if an already FDA approved drug used to treat a different autoimmune disease can stop the progressive MS brain activity that other DMTs cannot stop. In this trial, the researchers collect blood work, a set of MRIs, and a lumbar puncture. As part of the treatment, Alejandro injects himself with a subcutaneous injection and the researchers observe changes in his MRI or spinal fluid results.

Alejandro enjoys being able to ask the research team questions and learn from his experiences in clinical trials. Through his clinical trials experiences, he felt “pretty good that I had information that I needed” to make a decision. As someone with a “bias to action,” Alejandro feels lucky to get offers to participate in research studies and hopes that he is giving himself the chance to slow MS progression and get better. He also hopes that him “being sick will help somebody get better.” Alejandro appreciates the consent process when starting a clinical trial. Having someone wait for him to “nod and acknowledge” every part of the consent process gives him “peace of mind.”

 

Alejandro explains how his trial targeted multiple sclerosis (MS) lesions.

Alejandro explains how his trial targeted multiple sclerosis (MS) lesions.

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Now, with respect to this particular trial, there is this type of lesion in the brain, white cells, that is not responsive to that DMT. So, there's activity. There's MS activity happening in your brain even when you're taking these disease modifying therapies, or at least the one that I'm taking. And I don't think there's any others that would stop it. And so, we are testing with the drug, with thinking that it could actually stop the activity, that is not stopped by other DMTs.

 

Going over the trial information multiple times gave Alejandro “peace of mind.”

Going over the trial information multiple times gave Alejandro “peace of mind.”

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So, I had a first visit and a phone call. Once I got the protocol and the details of what it was, then they had a list of the things that I would have to consent to and it's like, you're committing to this, if you are going to be working with us.

We went over it once and then weeks right before we actually got the schedule done. And then, when we got the schedule done, and I got the schedule, we also went over it over the phone—like, these are the things that you're going to be agreeing to. And we went over the things I still— you need to confirm before you do MRIs and the things you needed to confirm before the lumbar puncture. So, we did all that, including COVID, making sure that I didn't have COVID. But then, when I thought I had done everything, and I was ready to get my dose, then we went over the form again and just a reminder of all the things that I was committing to and also, what the program was—so again and with a person, and with the person waiting for me to nod and acknowledge every single part of it, before we move into the next section, which is all welcome. Because there were things there that I had read about, but it was a good reminder. So, when I signed up, before I got my dose, I was like—I said, yeah. I have the information I need. It was not a matter of, oh, I forgot to ask this, I forgot to ask that. I felt pretty good that I had information that I needed. And so that gave me peace of mind, too. And so, I signed it. And I got my first dose.

 

Alejandro talks about how the trial covered his cab ride.

Alejandro talks about how the trial covered his cab ride.

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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.

 

Alejandro talks about giving himself injections of the study medication.

Alejandro talks about giving himself injections of the study medication.

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I have to inject myself every day, which is something I've never done. But it's, I think, what they call-- it's a subcutaneous injection. So, you're just injecting the fat in your body. So, it's not a very deep injection. And it's a bit painful going in, when you're actually putting the medicine in. But it's not something that, if you deal with MS pain, just can be pretty painful. It's almost like it's close to nothing. It's not a nothing, but in the big scheme of things, it's not a problem. And it's the first time I'm doing that. So, I feel like, if you wanted to do it, I think anyone could do it, for the right reasons. And I've tried acupuncture, and you get more stings with acupuncture. And they say they don't sting, but they do. And sometimes it can really sting. Also, I wouldn't want to tell people, don't do it because it hurts. I think it's a good therapy.

 

Alejandro said having a spinal tap was “not a great experience.”

Alejandro said having a spinal tap was “not a great experience.”

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And then to do that, first, I had to go in, get blood work, get a set of MRIs, and do a spinal tap or a lumbar puncture, which was not a great experience. It was all worth it, but I think that it's just something that you wouldn't do it, if you didn't have to, you didn't have a good reason for it. I think this is a very good reason to do it. And I think that for the lumbar puncture, I just think they want to see what's happening in your spine before and after you follow the treatment.

And especially the first one, when they did the lumbar puncture, that was two heavy days—so something to keep in mind.

 

Alejandro learns from research participation while also helping scientists learn.

Alejandro learns from research participation while also helping scientists learn.

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Now, I know I started—part of what I've done in terms of research is I do work with [ORGANIZATION]. And I appreciate everything I learn in that experience. Because they learn, and I like that. I learn, and I like it. And it gives me the sense of somehow, in some weird way, me being sick may help somebody get better. So, the fact that they—I think they asked me if I was interested in donating my body to science once I'm dead. I find that very, very cool. I mean, hopefully they don't help me die in the first place, which I don't want to do. I don't want to die. But what I mean is more about the idea that, more than ashes, your body can be used for something. I find that to be really, really neat. If they come and pick up the body, even better. It resolves a lot of logistical things.

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