On Monday morning, I was invited to an event at the Novo Nordisk facility in Malov to hear about the latest in diabetes and stem cell research. (Disclosures at the end of the post as always.) 

We heard from researchers from the site, as well as Sanjay Dutta from JDRF, and were given a tour of the labs to get a better understanding of the research process. Going into this event, I knew very little about stem cell research and its application in curing diabetes. (I should point out I still know very little…) Before I write more, I do want to highlight that the ethical sensitivity of stem cell research was addressed, although was not a focus of the event. It is undeniable that there are some people who refuse to accept stem cell research, or any treatments that come from it. I am not one of those people, but I was pleased to see the researchers acknowledging that this is an issue for many people around the world.

One of the speakers was Novo researcher Louise Winkel who gave a fantastic overview of stem cell research and how it applies to type 1 diabetes. If Louise was a senior school biology teacher, her students would all go on to study science at tertiary level. She made it interesting, understandable, and translated just what this very technical area of research could mean to those of us living with diabetes.

Jacob Sten Petersen shared how he has been working with Novo in diabetes research for 27 years. That’s a lot of time examining and investigating type 1 diabetes, trying to get a better understanding of just how diabetes works. Despite all the years of experience, and all the time spent with leading researchers and healthcare professionals, Jacob made a point of saying that it wasn’t until he actually met people with diabetes that he realised just how little he truly understood about life with diabetes.

That understanding increased exponentially when his young daughter was diagnosed with diabetes. You might think that having a child diagnosed with diabetes after you’ve given most of your career to researching it may make things a little easier. But listening to Jacob tell the story of his daughter’s diagnosis it was clear that the impact and devastation was no less at all.

As Jacob outlined the timeline of research, I was a little startled when he starting talking about this being the way forward to curing diabetes. I was even more startled at just how confidently, and almost casually, Jacob was talking about the cure. He was putting timeframes out there, saying that he firmly believed that no one in the room would die from, or because of, type 1 diabetes. I could tell that I wasn’t the only one surprised by this declaration.

Both Louise and Jacob were discussed the challenges of finding treatments, and ultimately a cure, for type 1 diabetes. Plus, there is the autoimmune response – you remember, the one that destroyed our beta cells in the first place – that needs to be addressed. Encapsulation will assist with that, but that also has challenges that need to be overcome. (It probably should not have come as a surprise when Louise told us the beta cells are the most difficult and sensitive cells, posing a number of trials, including how they stop secreting insulin the second oxygen concentration drops. Precious? You bet!)

However, despite the difficulties, Louise and Jacob were very clear about their goal and where their research was going: to cure type 1 diabetes.

I am very wary when it comes to talk of a diabetes cure. I don’t know one person with type 1 diabetes who has not heard some version of ‘The cure is just around the corner’. Sometimes that’s quantified with a timeframe. The old ‘five years’ chestnut is popular. At diagnosis, I was told five years; ten at the most. Well, here I am at twenty years and either I’ve not turned the right corner, or my first endocrinologist was being over-optimistic. I think it is probably the latter.

But I thought I’d made peace and accepted that that there would not be a cure in my lifetime, instead turning my hope – I have so much hope – towards better treatments, smarter devices, improved meds. I do not feel sadness or despair when I say I don’t believe I will be cured. I feel hopeful that thanks to ongoing research, my life will be less and less limited by diabetes.

Yet here I was, holding onto each word, and unlocking the part of my mind that I had, perhaps reluctantly, packed away many years ago. Would I allow myself to even think that a cure in my lifetime was a possibility?

The event concluded with a panel discussion, and as questions were invited, I raised my hand to ask how we balance talk about curing type 1 diabetes with managing expectations. Hope is important, but so is not being disappointed.

The discussion that followed was candid. I loved that the researchers could understand my apprehension – and that of a number of others in the room who also shared their reluctance to use the word cure. And that ‘cure’ meant different things to different people.

Because: what is a cure? I don’t think there is a simple answer to that. For some, it would be a fully functioning closed-loop automated insulin delivery device. But that would still involve an element of ‘user input’. Even if calibrations are not required, there will still be the need to change sensors, refill cartridges, change infusion sets.

For others, a fully implantable closed loop device which only needs ‘topping up’ with insulin occasionally would be considered a cure.

I know people who have had islet cell transplants, and pancreas transplants, but they require immunosuppression therapy and I don’t know that necessarily constitutes a cure.

Encapsulation may negate the need for immunosuppression, but would the cells need to be topped up…and how frequently would that need to happen? Would glucose checking still be required?

It is subjective and each person with diabetes would have different criteria they use to accept what is and what isn’t a cure. I don’t know what my criteria is yet.

I like the idea of not dying with – and certainly not dying from – type 1 diabetes. Do I think that is a reality? I don’t know. I feel that my adamant claim that there will not be a cure in my lifetime has been challenged this week and I’m okay with that. Because what hasn’t been challenged is the hope I have.

If in my lifetime with diabetes, the day to day tasks are reduced, the emotional burden is lessened, the fear and anxiety can be diminished, treatment of diabetes-related complications improves, then I feel that I am still somehow out in front. I may not be cured. But each step forward is a step in the right direction. Even if I don’t make it the finishing line and handed a cure.

DISCLOSURE

The DEEPtalk event was hosted by Novo Nordisk and was held at one of their facilities in Copenhagen. I was invited by the Global Patient Relations Team to moderate the event. Novo covered costs for my (premium economy) flights (I used my own frequent flyer miles to upgrade flights) and two nights’ accommodation as well as transfers and meals while I was in Copenhagen.

I was also invited to attend an information event where Novo employees spoke about current stem cell research in diabetes.

There is no expectation from the Global Patient Relations Team (or Novo Nordisk more broadly) that I will write about the event or other activities held while I was in Copenhagen and what I do write is mine. This summary of the stem cell event and presentations is all my own interpretation and has not been reviewed by Novo Nordisk prior to publication.