August 3, 2026

Julie Bell’s Clinical Trial Journey: Why She’d Participate Again

In rare disease communities like ours, progress in drug development is often slow, in part because the patient populations needed to study these conditions are so small. Clinical trials remain essential to understanding how new therapies work for people living with rare neurological conditions, but for many patients, the prospect of enrolling can be daunting — particularly for those who depend on continued access to a treatment that keeps them stable. For patients living with CIDP or MMN, many of whom rely on regular infusions of IVIG, participating in a trial can mean stepping away from the treatment plan that has sustained them, sometimes for years, in order to try something new. It is no small ask. And yet, patients across our community continue to step forward, motivated by the hope that their participation will help move the science closer to better options for everyone who comes after them.

Julie Bell is one of those patients. She has lived with CIDP for 31 years and has been on IVIG for the last 26. In 2023, she enrolled in a clinical trial for Vyvgart Hytrulo, a once-weekly subcutaneous injection being studied as an alternative to IVIG for people living with CIDP. Although Julie’s participation didn’t unfold the way she’d hoped, she was able to medically withdraw from the trial after consulting with her physician. In the conversation that follows, she walks us through her diagnosis, her reasons for enrolling despite three decades of hard-won stability on IVIG, what withdrawal actually looked like from the patient side, and why she’d still say yes to the next trial her doctor green-lights.

Walk me through your CIDP diagnosis — how long did it take, and what were you dealing with before you were finally diagnosed?

My CIDP journey began when I was 27. I was pregnant with my son and had an almost four-year-old daughter. I gave birth to my son in April, and I noticed I had an awkward gait and my hips were kind of sore. My parents, being medical professionals, also noticed the awkward gait. In my mind, I was thinking it was a post-pregnancy waddle, but my dad said I needed to see a primary care physician and an orthopedist. This all happened between Thanksgiving and Christmas of 1995 into 1996.

I went to my primary care physician, and he ran a bunch of tests. One of the things he had me do was stand on my toes, and I couldn’t stand on my toes without holding onto the counter. He wanted me to stand on my heels, and I couldn’t do that either. He sent me home with a referral to see an orthopedist — all was fine and dandy, until I got a phone call the very next day at work telling me that I was not going to see the orthopedist, but that he had made an appointment for me to see a neurologist at one o’clock that afternoon. At that moment, I knew something serious was going on.

I went to the neurologist, and he ran more tests and gave me a possibility of four diagnoses. He said it was either muscular dystrophy, muscular atrophy, multiple myeloma, or chronic Guillain-Barré. He did a muscle biopsy before Christmas, and by January he had the diagnosis of chronic Guillain-Barré, which is now CIDP. That was 31 years ago.

After you got your diagnosis, what treatments were you on initially, before you went to the trial, to deal with your CIDP?

Initially, the doctors 31 years ago really didn’t know what to do. They started me out on plasmapheresis, which I had marathon rounds of  — 28 days in a row — until my platelets and blood levels were so low that they needed to give me a blood transfusion. After that, they started me on prednisone, and I was on heavy doses of that for a long period of time. I ended up with the cushingoid face — lots of bad side effects from the steroids. The doctors slowly weaned me off the steroids and started me on IVIG. I’ve been on IVIG for probably 26 years now.

And how were you managing during that time?

There was a period where I could go for a month or longer between doses without needing the IVIG. Then as time continued, and life happens, and stressors going on in my life, the time decreased to where at this point, I’m infusing every two weeks. And if I go much beyond the two weeks, my abilities deteriorate.

What motivated you to join the trial?

One of the things that motivated me was getting the “okay” from my neurologist. She actually happened to be leading the trial. So, I said, if you think it’s good for me, let’s go for it. Give it a try.

I think it’s important as a patient — particularly having had the disease for 31 years — they can’t try these medications out on normal people, quote unquote. They have to try them out on individuals who actually have the disease to find out if it will be effective or not. If people like myself don’t do trial studies, there can’t be any advancements in the production of medications that may not help me but would help others. We’re one in a hundred thousand or whatever our statistics are now. I figure there’s got to be a reason why I have this disease. One of the reasons, I believe, is to help educate others, but also to help when it comes to research and making things better. What wasn’t accessible to me 31 years ago might be completely different today— and it’s hopeful for the future, when people are diagnosed. I was lucky that I was diagnosed quickly, but the choice of medications still has not changed a whole lot in the 31 years that I’ve had the disease.

Did you hear about the trial through your neurologist originally?

Yes. She gave me the green flag to go ahead, and I said, okay, great, let’s do it.

Walk me through what the informed consent process was like. Did you walk in feeling like you knew what you were signing up for?

Yes, the informed consent was really well thought out. I had questions, of course — I asked the trial team and my neurologist. One of the important things for me was to know: if I was on this medication and had some sort of adverse effect and could not continue with the study, what was the repercussion? What was the net to catch me? So, that was important for me to know — that I could immediately go back on my IVIG if there was a problem.

Were there any other concerns you had about signing up and participating?

No, I didn’t really have a whole lot of concerns. In this particular study, I knew I was actually getting the medicine. I think it gets a little questionable — or I know patients will question — when it’s a study where there’s a placebo involved versus the medication. But I still think, as patients, we need to take those chances and just know that most of these trials do have a backup if you’re not successful on that medication.

Jumping into the actual trial itself — walk me through what participation looked like week to week.

I met with my neurologist first, and then with the person who was handling the study. It involved a lot of measuring of what my abilities were — the push-me, pull-me’s, hand strength, grip strength, all sorts of different abilities. And I continued my medication. They did lots and lots of blood work — I think the first time they took nine or ten vials. It’s very well managed by whomever is running the trial. They took all sorts of different markers and knew what was going on in my body before everything began.

I was told to continue with my medication, but I had a shutoff date. My last IVIG that was due would have been on a Tuesday, so I didn’t get it that Tuesday. I waited, and as soon as I felt like there were symptoms occurring — that I was becoming weaker and unable to do things — I was to call the study manager. For me, it only took about four days after being off my medication, past the due date. So basically two weeks and four days for my body to say, hey, wait, something’s missing. I started getting weaker.

I called the study manager, went into their office, and they immediately started me on the trial. Then, weekly, I went in for checks. In this particular trial, it was a shot every week. I would go in, and the study manager and their staff would do more blood work. They would test the strength. They would give me my shot, make me wait, and then send me on my way. The first visit was the longest — after that, the second and third visits weren’t as long.

What did the effects look like? Did you notice any changes while you were on the drug, good or bad?

With this specific medication, I began getting weaker. I got to the point where I couldn’t feed myself, because my hands were shaking so badly and I just didn’t have the muscle strength to get my hand to my mouth. My walking was also an issue — my legs were just much weaker; my drop foot was floppier. At that point, when I called the case study manager, they immediately got me in to see my neurologist. She basically told me she wasn’t going to take me any further in the study — that I needed to stop right away.

That was a relief, but it was also kind of scary. Like, oh my gosh, what did I do wrong? But in hindsight, the doctor feels that because I’ve been on IVIG for such a long time, maybe I’m considered IVIG-dependent — which does happen sometimes.

Did you feel like that process was well-handled when it came up?

Yes, the process was well-handled. I didn’t have to worry about insurance, and “oh my gosh, I’m off my IVIG, is insurance going to cover it again?” Everything was already set up. Everything just went so smoothly. I started my IVIG back — they gave me a loading dose, so that was four or five days — and after that, it did take a while to regain what I had lost, but I did regain it all.

It’s good to hear that you regained it, and there weren’t any significant effects afterwards.

Right. And even though I took that chance to do a trial study, just because that particular medication didn’t work for me doesn’t mean it’s not going to work for other people. I’ll tell you right now, it is out there — people are using it and are very successful on it. As we all know, our disease represents itself differently in each of us, and different medications are going to work differently for each of us. You can go into a trial with the best of hopes that it will work, but even if it doesn’t work, that information is still used by the pharmaceutical companies to know hey, we might have a group of patients that this isn’t quite effective with. That prepares them to know this may not be for everybody.

You’ve mentioned that you appreciated the time you had in the trial. What did you take from it?

I took from it the fact that here I am, a patient who has this disease. I have a chance to make history, so to speak — or to take what I have, which is not such a good situation, and make lemonade out of lemons. I’m stuck with this disease, I’ve had it for so long, but if I can make a change in science and help improve somebody else by participating in a trial, then it’s worth it to me.

I’ve gone to my doctor and said, hey, are there any other trials out there? I was just at my neurologist a couple weeks ago and asked whether there were any other trials — not like the one that I wasn’t successful on — that I could participate in. I’m still willing to participate in trials, as long as I get the green light from my neurologist.

If you had a friend or someone you knew who was interested in doing that, what would you tell them?

I would say we’re a part of history, and we have a chance to make our lives better. And if it doesn’t work for us, we have a chance to make other people’s lives better, so they don’t have to go through everything we’ve gone through. I think it’s worth it, particularly knowing that most of these trials have a backup if it’s not working.

What would you like for researchers, sponsors, or the foundation to understand more about the patient side of this?

From the patient side, it’s very scary when you know you have this drug — IVIG — and that IVIG is keeping me as a functioning and productive member of society. And then you’re talking about taking my safety net away and trying something else. That’s a very scary thing to think about as a patient. We know that’s our lifesaver, and if you take that lifesaver away, we feel like we’re going to drown.

You have patients who had much worse symptoms than mine ever were at the beginning, and some that still have much worse symptoms. It’s scary — if you’re ambulatory now and you were once in a wheelchair, the thought of going on a trial medication might cause you to get back into that wheelchair. It is a scary thing.

But at the same time, it may be a very positive thing. This medication may enable you to eventually run or give you more energy to do the things you would like to be doing that you can’t currently do. So, it’s kind of a catch-22, and you just have to decide if it’s a risk you’re willing to make — to help others and yourself.

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