Recently James and his cousin Kaitlyn both have been able to get involved with a company that is conducting clinical research trials, and it’s been a hugely positive experience. From the time James was diagnosed, we’ve heard about taking part in some of these trials. In the early years, the logistics didn’t work out well for us. It was too hard for us to take part for a number of reasons. Now that James is a teenager, thankfully we’re able to participate.
And it has been awesome.
First of all, I think there is a lot of value in participating in something that could potentially increase the quality of life for people with diabetes. James has not participated yet in a trial for a potential diabetes cure, but how amazing would that be? He would certainly be interested! In the meantime, he’s done a few studies testing out diabetes technology improvements. In our family we’re big fans of technological improvements! Just since James’ diagnosis we’ve seen so many life-changing innovations, and we’ve embraced pretty much all of them. I think James feels some kind of satisfaction in knowing that he’s a part of it all.
Then there’s the fact that James is a burgeoning scientist. So far he isn’t interested in going into medicine, as he prefers physics, but he is fascinated with the whole process each time he participates in a study. It’s a great opportunity for a teenager to see an academic subject such as science in action. He always asks good questions of the technicians and is interested in processes and procedures and understanding why they need to do the things they do.
And, of course, there is the compensation factor. If I’m being honest, that’s James’ favorite part. Studies like these regularly provide compensation. The first really big study netted him enough cash that I was curious to see how he spent it. I was gratified to see that he put aside two-thirds of it for college and other savings, but he still had a nice chunk left over for spending. And what did he buy? Well, he’s a teenage boy. He bought video games, movie tickets, and snacks — more than he’d bought in many years prior, and he loved every minute of it.
I personally think participating in medical trials is one of the unforeseen positive side effects of a diabetes diagnosis!
So are there any downsides to participation? Well, there are a few that everyone should evaluate.
For me it hasn’t been super easy. The last trial James participated in meant that I drove him to a clinic 50 miles away five times in about a month. I also needed to find childcare for my other kids on clinic days. Thankfully this wasn’t too difficult for me to arrange and we made it happen, but it could be hard for other families.
I was worried about clinic days and James missing school. He’s involved in a lot of honors and AP classes, and it’s easy to get behind. Still, in this endeavor his teachers were extremely supportive. I think they realized the value in what he was doing. It not only benefitted the diabetes community as a whole, but it had some educational value for him too. And — and this is an incredible coincidence — when he showed up to the clinic, he discovered that he would be spending the whole day seated next to a friend of his who happened to share all the same classes that semester (they were in different periods but had the same courses and teachers!). Let it be noted that James attends a high school with some 2,500 kids, so really this was almost miraculous.
Of course, neither teenager spent much time at the clinic studying. Instead, the clinicians make the experience as enjoyable as possible for the teens. In this trial they spend most of the morning watching movies on a big screen, and they’re allowed to request whatever food they want to eat. James was really excited to eat noodle cups.
And that pretty much embodies our experience with medical trials! We’re grateful for all of it — the research it sheds on something we’re passionate about, the opportunity to earn a little extra money — and for James it’s just kind of fun to relax for a day, surrounded by buddies, eating a cup of noodles. Let’s hear it for science!
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.