Having recently completed a trial of the bionic pancreas (see Huffington Post article), Anna Floreen is the diabetes research star of the moment! We asked our followers on social media to send in their questions about her experiences and about type 1 research in general.
Were you really, in only 5 days of the trial, able to change your mind-set and let go of all the over-thinking related to managing diabetes?
Participating in the study was life-changing. It took about 24 hours or so to get used to the idea that I really didn’t have to think about what I was eating, the effects of what I was eating, and adjustments of any basal or boluses based on food or exercise. It was amazing! I was still attached to 2 pumps, and had a nurse by my side monitoring my every step 24/7, so in that aspect I still sort of felt like I had diabetes, but the worry went away. I didn’t have to think twice about what I was doing and how it would affect my blood sugar, I never felt guilty, and that was the best part.
Throughout the study people kept asking me: “how are you feeling?”, “I feel amazing” I told them. I didn’t feel one symptom of a low or high blood sugar throughout the 5 days. This was the best I’d felt in 24 years. When we have diabetes we don’t “look” sick, yet inside we are screaming with feelings, and for the first time in years I felt worry-free and felt ok giving up those feelings to technology.
I highly encourage you all to look in to research opportunities like this through your local clinic or organisation. It was awesome to know I was a part of something transformational for the type I diabetes community. The automation of glucagon and insulin release was unreal and never thought imaginable in my lifetime. We are clearly on a road of pure hope!
How do you see the bionic pancreas in younger children?
This particular phase of the trial was only tested and used for adults, but I do know that children attending diabetes summer camps will be using the same device this coming summer. I am sure there will be different challenges and worries, but ultimately the goal is to have the same end result-less burdensome life living with type I diabetes for all ages. We all take different amounts of insulin and because of our size need various doses and rates throughout the day so I can only imagine that perhaps the size of the pump, cannula, and length of tubing will be reflective of children of that age.
Is it only certain people who can use the bionic pancreas?
The bionic pancreas still needs to go through a few more phases and trials in different populations before it gets considered for FDA approval. Many different clinics and researchers are working on some form of the bionic pancreas, but according to the investigators and doctors that formulated this particular trial, they hope that in the next 3-5 years this product will be available. In terms of criteria to participate in the study-I would be lying if I said it was not a lengthy process. I had to have a physical exam and undergo some blood work to make sure I “qualified,”, and luckily I did. We have come a long way since the first insulin pump and blood glucose meter decades ago and I only hope this is the first of many waves of this next best product out there.
For more on the bionic pancreas, watch this video featuring Dr Ed Damiano from Boston University.
What are the main challenges facing type 1 research?
There are many challenges facing type I research, but I think one of the biggest challenges is that traditional clinical research is often presented in a way that is difficult to understand, especially for patients and their families. If doctors and investigators perform research, they might present their findings in a clinical journal article or PowerPoint presentation format, and more often than not the subjects participating in it may not even be given those results or have access to them.
Why aren’t we hearing more about type 1 research and the benefits of it to people with diabetes?
As the world of social media moves faster and faster, I think we will begin to start hearing more about research. Research takes time, money, and people, and unfortunately not as many resources are spent on disseminating the results. In addition, sometimes when we do participate in clinical research, our names and personal information become de-identifiable and it is up to us to share our experiences to the community. Through the internet and online communities like Glu, we offer the opportunity for people with type I to share their experiences, educating others about the fears and tears with type I and allow others to grasp what is taking place behind the doors of a laboratory.
Glu (www.myglu.org) has a goal of accelerating research and outcomes through an online community just for people with type I and their caregivers. Through Glu, one has access to surveys and questions with immediate results, and the ability to connect and empower others living with type I.