Embracing Research and Finding Support to Manage Type 1 Diabetes - Episode 2
Sumita Singh, a T1D advocate, discusses her family’s decision to enroll their daughter Bella in a clinical trial for T1D and shares their experience.
Natalie Bellini, DNP, FNP-BC: Then what? How were you approached about research opportunities, or did you find those as well? It sounds like you did so much of your own research.
Sumita Singh: We found it, like I said, at that time right before Bella's diagnosis, I worked for a published scientific. It was in my, if you like in my context and clinical trials dot gov, I was aware of that and I look back and, I'm not sure what triggered me, my work experience and just being a problem solver and both my husband and I, by day 3 actually, a lot of parents asked, we were told when their child is diagnosed, Hey, what about the research and what about a cure? And of course, we asked all those questions. We asked about stem cell research and such. But it was important for us to do 2 things. One is, to participate in the science associated with whether it's life improvement for a child or cure on anything along that spectrum. We want to be part of that journey. We want to bring Bella into this experience with science on her side, that was important to us. Not take a victim mentality. The second night, my husband and I, were both on clinical trials dot gov looking at what's the cutting-edge research. There were 2 trials in fact, that I had reached out to, there was one at Yale for a blood pressure drug you might have heard of, and looking at whether that could be applied for early onset type one diabetes. And then there was teplizumab, and we applied to both, we missed the window for the study at Yale by a week. And we barely made the window for teplizumab. If I tell you how we got in the trial, someone could make a movie. It was of funny if I look back, that process.
Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES:I was just going to say, what was it like getting involved in a clinical trial? Whatever you can tell us about the experience. Any hesitations? Were you nervous at all? Was she nervous at all?
Sumita Singh: Absolutely. We haven't done clinical trials as a family. We knew the idea of what this is about, and we understood they're double-blind studies and we didn't want to be in a phase 1, we wanted largely to be in a phase 3. And those were some of our considerations. But it was nerve-wracking to be honest with you because you're walking into something, you have no context. And its clinical research, there are downsides and risks associated with that. We studied all of that. We did talk about that. In fact, Bella is very close to both sides, both grandparents, my parents and my husband's father, his mother passed away a while ago. We brought the whole family together. We all got together, and we talked about the trial, and we didn't influence anyone. My parents were asking me questions and Bella was asking me questions. We all collectively as a family concluded that, the end of that discussion was even if there is a 1% chance that you can benefit, we want to take the chance. We're a soccer playing family, so every shot at goal missed is a shot you don't get. We were going to take all the shots at goal. But the process, the journey was pretty interesting. If you'd like, I can go through that.
Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES:Sure.
Natalie Bellini, DNP, FNP-BC: We would love it. I think some of the feedback that we've gotten is who takes all that time off? Who would do this? And I think both Diana and I as clinicians have had this conversation and said we would, we would find a way. So, tell us about finding a way to do this and set your family up to, to get Bella what you wanted her to have.
Sumita Singh: Yes, there are considerations. And I have the study binder in front of me and the letter that we had to sign, it tells, you all the commitment and they're very clear that you could be on the placebo. There are all these adverse effects and that's what they need to do. They're doing research good on them for having all the documents in front of us. But they talked about 35 extra research visits. We live in northern New Jersey; the trial was in CHOP in Children's Hospital in Philadelphia. It's a drive for us, we both work. We had to figure out that process. Every time we go, we must get blood tests and urine tests. She had to be 12 separate days 6 month or a year apart, getting daily infusions. We had to stay in Philly for those 12 days. So that's disruption in education. She had to do the mixed meal tolerance test 5 times, which if anyone's done it, it's it takes a toll on you because from 10 o'clock at night till the time you take the MMTT, you can't eat, you can't be too high, you can't be too low. Imagine doing that as a newly diagnosed type one. So, we knew that there are risks in life in everything you do. You can ride a bike and things can happen and as a type one you quickly learn life is about planning. We planned and what we tried to do is the first 12-day infusion we did during spring break, so it wasn't disruptive to her. And the CHOP team was, incredibly accommodating. There are not a lot of high schoolers who do this largely for the reasons you've mentioned. We did the trip 35 times there on Fridays, so it was not too disruptive on school schedule. We stayed in Philadelphia, they paid for the hotel room, and we stayed there. And thanks to hybrid learning, she could do the schoolwork. Her academics were affected the second time around because she was in the throes of freshman year of high school. She's not getting her PhD, doing research in cancer. It's freshman in high school. You must have perspective. I think there are considerations. Every family needs to make those decisions but to us one of the biggest other than being quite frankly, so excited that it got approved one of the biggest outcomes and benefits was that Bella got to spend time with the best minds in clinical research and type one diabetes. She would sit there, and we'd typically would take a step back and she'd ask all kinds of questions, I think the more kids, I say children can advocate for themselves and ask those questions, be vulnerable, talk about their lives with diabetes as opposed to having an endocrinologist visit, which is just a chore. It made it interesting, and we made the Philly trips super interesting. Her father went to college there, so we would go to all his hangouts, and we would do trips there. We'd bring our younger daughter there. Those were hard visits. But we bookended them with fun and we talked a lot about her journey and what she's experiencing. I recommend it to anyone who can get the opportunity to participate in research. It is profoundly valuable to do that. Yes, it's demanding, but life as a type one is demanding, period. So, it's a burden, but you can plan around it, is my view.
Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES:That's great to hear. And thank you. We need people to do research, otherwise we would never have advances.
Transcript Edited for Clarity