Embracing Research and Finding Support to Manage Type 1 Diabetes - Episode 3
Sumita Singh, a T1D advocate, discusses with Diana Isaacs and Natalie Bellini how teplizumab and other advances are providing hope to the T1D community and talks about the challenges and needs of a diverse T1D patient population.
Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES: Speaking of that, it's exciting that teplizumab is approved now for the delay of the onset of type one diabetes. I know you've been during this other clinical trial with it when you got this news, but what you think about that, and other research developments related to this?
Sumita Singh: The first thing I did, of course I congratulated the group the CHOP team, they're the ones who are doing the hard work, and the patients. But the first thing I did was I went back on clinical trials dot gov to see what other research there is and sadly, right now there is no drug that's being researched. My hope is that this should open more investment in type one both research and drug approvals. I think my hope is that people like me and others who participate, talk about, we did something, it resulted in something. The odds are slim but unless you do participate in research, nothing happens. We're having those conversations. I'll tell you a little personal story. I was at a dinner with fellow parents, and we were talking about participating in clinical trials and such. And of course, I advocated for it. And one of the parents whose child had been diagnosed for a long time, said they had the opportunity to participate, and they chose not to. And another parent said what if it doesn't get approved and what do I tell someone whose child has been diagnosed? There were lots of what ifs. And, my view is, let's be part of the answer to the what ifs on those. I don't even know if Bella got the drug. We won't know until later this year, and that's OK. Quite frankly, we don't want to know although my parents keep asking. But she's super happy that she did this and she talks about it and that gives me joy.
Natalie Bellini, DNP, FNP-BC: I have a question about, you have mentioned that a couple of times now that you have another child, have you screened your other child?
Sumita Singh: First thing we did. We screened her we screened ourselves both of us. It's a worry, we try not to talk about it. But we did screen. All 3 of us screened. We try on that.
Natalie Bellini, DNP, FNP-BC:Excellent. I'm a big believer in trial and that I think that it's important for us to know. But we do have patient people with diabetes who say, I don't want to know if my child is going to get diabetes, I'll know. It's a very different thought process and we need to respect everyone as clinicians, as people learning to open up in the world and talk about our differences and our similarities. But I'm a huge believer in let's see what we can do as opposed to not.
Sumita Singh: We did it. My younger daughter's Pia and for the first 4 weeks, you don't know your left hand from your right hand. You're doing math and we have binders. And you are trying to be precise, and I think for us food, I mean we're, we're an Indian family, so food is like our love language. Everything is around cooking and, try cooking Indian food with a precise recipe and calculating carbs, it's not going to happen. I spent a lot of time initially on just the food part of our life because that's a big part of our life. Once we got through some of that, or at least we could see some light on the horizon that we'll figure this out. I think by week 5 we had all tested, we'd got the trial net kit and we had done the testing and the timing of that was important because at the same time we were also in discussions with CHOP about the clinical trial and what I was connecting the dots on is a, I would not want my second child to go through what Bella went through. That was 6 months of hell, and she kept telling us, we just didn't connect the dots that this was type one diabetes. So, I wouldn't want Pia to go through that. And if she knew and teplizumab did get approved, then there would be something we could do about it. We could give her something to refer. I suppose knowing is, being an informed consumer, if you like is better. But I get the point of view that you'd rather not know and enjoy your life and be happy until the inevitable happens.
Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES:I think with the approval of this drug, at least we hope there will be a lot more screening happening. Speaking about that, I'm curious what advice you might have for physicians or others in diagnosing or managing people that have type one diabetes or, screening and all that kind of stuff?
Sumita Singh: You start with the pediatrician because all of this, most of the diagnosis is happening at that level, and then you bring the specialist in and I can't say this enough I happen to sit now on the JDRF local chapter board and I'm always talking about pediatric education, like a pediatrician education, if you like. They must talk about this. It's life changing. Just like Crohn disease and all these autoimmune disorders. And screening for those, let's just do that. If we had done that, we may have taken a different path towards Bella's care. To me, that's number one. I have 3 passion points. One is screen, screen, screen, have the pediatricians talk, you can't do that enough. It's such a teachable moment, if you like, for families. The other is nutrition, the nutritional education to make it culturally contextual. All the information we got when we left the hospital, that's just not food we cook. I had to be self-directed, and not a lot of families have the time or the means to be self-directed. And connecting me to someone of my background who understood how I could cook my food differently would've been so valuable. Would've saved a lot of heartache in the initial weeks. I think the third thing is much more sort of on the science side of it is there continues to be very little representation of people of color in clinical trials. And having that is hugely important, because everyone's physiology is different. We don't know if Bella too teplizumab but it likely will act differently for my genetic code than your genetic code, if you like. So again, if we all want to benefit from it, we all need to participate in it. I want to see all colors, if you like, represented in these studies.
Natalie Bellini, DNP, FNP-BC: Wow, What a wonderful discussion.
Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES: Yes, completely agree.
Natalie Bellini, DNP, FNP-BC: We've learned so much today from you. Thank you so much.
Transcript Edited for Clarity