Better treatments or a cure?

Type 1 and LADA
1

Here’s a question that has been on my mind a lot. I am an associate editor at the Juvenile Diabetes Cure Alliance, and we are focused on advocating for a cure for type 1 diabetes - which makes us pretty unique, as there is no other organization with that sole purpose.

Sometimes when people discuss issues with us (both here and on other places), the idea gets brought up that diabetics should be more concerned with living healthier, or searching for better treatments as opposed to a “cure”. But then again, people donate hundreds of millions of dollars in fundraisers that specifically promote the search for a cure.

So, to put it crudely, what do you think? What should we, as a diabetes community, be focusing on? A balanced answer I suppose would be all three - live healthy, get better treatments, keep hoping for a cure. But in a way, they are all related. A cure, which should be able to lift most, if not all restrictions from a person’s lifestyle, would clearly be greatly beneficial for a one’s health. On the other hand, many people are still far from keeping perfect numbers even with the latest pumps.

It seems to me that no matter how many beeping electronic devices we have, they are never going to be an adequate substitute for a cure. And no matter how healthy and active a person tries to keep him or herself, complications are always possible (Of course, that is not to say that we should not put our best effort in educating ourselves and living healthy - but with type 1, there is only so much you can control.) A cure might be the most ambitious of the three, but also the only affirmative way to get rid of diabetes for good.

2

Why does it have to be EITHER a cure OR improved treatment ?



It is likely a cure will take time, and in the interim, the better care we take of ourselves, the better shape we will be in when

a cure is found (and the better quality of life we will have in the interim).



I do understand that some people feel strongly about this issue and when they give money, they would like it to be directed

according to their wishes, hence organizations focused on one or the other may be of interest to them.



As much as I would like a cure, I don’t want treatment research stopped either. Look how far we have come in the last few years!



I don’t understand why it has to be a binary choice.

3

The fact of the matter is that a cure is still a very elusive thing. I have not sen much of anything that would suggest we are on the door step knocking. If you accept that as fact we still have a while to go before millions of people will be “cured”. During this time they may develop complications that are unreversible. When all the eggs go in to one basket only part of the problem is being worked on. Developing better strategies to help NOW is something that can be done in a relatively short time because we already have technology that is not perfect but can surely help if we put it all together.

I think a cure is an admirable goal but what am I suppose to do until then? What if you never find one? Was all that money a waste? Could it have helped me NOW? These are all questions that need to be asked.

That being said we have a group that is looking in to treatments for complications and better therapies for the short term (JDRF). I don’t see why you guys can’t be focused purely on a cure while others work on solutions for living better with diabetes now?

4

I’m familiar with your organization from another poster who frequents other message boards. I’m not sure I agree with your organizations definition of a “cure” (especially involving the a1c of between 6 and 7% and maybe involving additional pills and injections). I think in our real world we should keep striving for better treatments (believe me, you didn’t want to be around for the days of urine testing and dull needles) and still search for a real cure which doesn’t involve additional intervention.

Cora

5

I agree that sometimes the exact words are troublesome. When does a big breakthrough in treatments start being labeled a “cure”? For some people, if the need to take daily insulin shots or keep an eye on your blood sugar is removed, that itself is good enough to be called a cure. Others, however, would not agree.

That is why I think it is important that we have an idea at least of what we are looking for,

6

I’ve discussed the topic on some of your other posts, and in this case I have to agree fully with your last paragraph. We’ve had improvements in treatment over the years (the 5 second blood glucose reading versus the 2 minute BG reading or 5 minute urine test). These improvements have kept us healthier in the long run, but at the same time have become MORE invasive in our lives. Thinking back to the early '80s when I took one daily injection – then graduated to two. I was taking at least 5 a day before moving to an insulin pump and becoming “tethered”. So, I’ve gone from 1 shot a day of Regular/NPH to having devices taped and tubed to my body, beeping and blinking to the point of annoyance. On the surface, that doesn’t seem like progress. I would say that it definitely IS progress in the long-term health of the patient, but while pumps and CGMs offer a certain degree of flexibility, they also add a degree of restriction and responsibility which wasn’t there with the simpler treatments. When I think of the possible future treatments that comprise a so-called “artificial pancreas”: an IV insulin delivery with immediate response, an IV CGM with immediate glucose measurements, and a third 24/7 intrusion delivering glucagon as needed, I’m not so sure I’d want to sign up for that. I’m also not so sure how much I’d trust a machine to respond to my body’s signals - presumably still calculated from rations and factors that I’ve given it.

I will also add that treatment research has funding, as it is part of the normal product development lifecycle for the companies that are actively competing for the business of diabetics around the world: Medtronic, J&J, BD, Bayer, Novo-Nordisk, and so forth. They will come up with new and innovative products, because if they don’t, they will lose to their competitors.

A cure, on the other hand, simplifies things. It relieves the patient of a routine or restriction rather than transforming it from one form to another. It removes the risks of hypo- or hyper-glycemic episodes which can be so dangerous. It takes away a huge financial burden from the patient, whereas treatments are ever-increasing in cost and can make the saved life seem not so desirable.

Currently, there is little funding for a cure, outside of donations, because there is virtually no business-case for one. While ambitious, I do believe there are several researchers who have come mighty close to cracking the code, and if they can focus more on the research and less on the fundraising, they’re bound to do it.

Don’t get me wrong, I don’t discredit the improved treatment methods that have been developed over the past years. They’ve done wonders for my life, and by extension, the lives of my family. But the underlying issue is still there, and the same risks of the same complications have not gone away. Let us fix the problem once and for all and, as PWDs, direct our efforts towards a cure.

7

Hi Stoyan: I am a pragmatist. I don’t think there will be a cure in my lifetime (and if I am wrong, I will throw the big party). I see how better technology has SO improved my life, even in the 16+ years since I was diagnosed with Type 1. But for all people with autoimmune diabetes, I want the cure. So I vote for both.

8

Diabetes is not easy to live with, especially because there are sooo many side effects. It will help with health cost, which I am sure would be better financially across the board for everyone. Not to mention are carbon footprint would be less, we have countless supplies and nothing we use can be recycled. There is no real way to teach someone how to be a T1 because the rules are different for every body. I think a good doctor and internet support/ social groups is good enough…

And although I doubt there will be a cure in my lifetime…I dont want a new and improve pump or case to carry my insulin or a meter that has iTunes…I want my body to work, so I am Team Cure!

9

Hi MossDog,



Thanks for bringing something up that I’d like to clarify - we are not stopping or opposing people from donating money towards other causes. Of course, we believe that a cure would solve the most problems, but if people wish to support other projects - that is well and good.



However, the majority of the successful fundraising campaigns around diabetes are focused specifically on the message for a cure. It is always “walk to cure diabetes” or “tour de cure” - and it is these types of events that raise hundreds of millions of dollars each year. Our issue is that that specific money is being spread around and used for other purposes. Last year from the combined expenses of the four major organizations, roughly 38% of the cure research money actually went into the research labs. It is that type of thing we find unacceptable and want to change.

Thanks to everyone else for your comments too - I definitely agree that technology helps a lot in life - it would be hard imagining getting through the day without a way to test your blood sugar levels. But yeah, the only real permanent solution that will also get rid of complications is a cure.

10

I guess I am greedy, because I want everything! I am also a skeptic and although I doubt a cure will happen in my lifetime, I would love to be proven wrong on that one. Like Scott, I have seen technology change a lot the last 28 years but there are still a lot of us having to fight insurance companies to get that technology. Just because stuff is there doesn’t mean everyone can have it. Even people that currently have it are having to fight to keep it.

I also believe that there is too much profit to be made on us and those companies are going to do everything in their power to stop a cure from happening.

11

Very good point. After my specific donation to a physician engaged in specific research, I raised money and walked in the JDRF Walk “For a Cure” for the first time in my life (after 30 years of D). I have no idea where that money actually went, but there are a few reasons I still chose to do it. First, my participation was triggered by learning that the daughter of someone who lives around the block from me also has T1D. So it was a way to meet a neighbor and to meet someone else in the same situation. Second, awareness does count for something - whether it encourages people to contribute money or just accept people with diabetes as a social norm rather than an outcast. Third, even if only one-third of the money raised goes directly towards research, the big organizations - with their walks and T-shirts and ads on the side of buses - raise far more than three times that of the smaller groups that rely on word-of-mouth and Facebook posts. (not that I fault the latter in the least).

Yes, I was a bit concerned over where my money would go, and I would have rather given to a more targeted organization, but I got a lot of personal fulfillment out of the walk, so in my mind I can justify giving to the larger organization.

12

I see what you are getting at but even your own definintion of what at first would be considered a “cure” may be much different than the way others define a “cure”. With such a broad definition and people making up their own, could they technically be working on their version of a “cure” even though it dosen’t fit your group’s definition?

13

One thing we are definitely not limiting is the source of a cure. We want to support whatever has the best chances of delivering the best results (within our lifetime). Stem cells for example get the most media attention, but many say they have not brought us that much closer to a cure as some would believe. We shouldn’t put all our eggs into one basket - until we have solid reason to believe that basket is going to be the winner.

I would also argue that our definition is compatible with what most people would look for in a cure. It comes down to giving people the chance to live a lifestyle that is for the large part free of the current burdens of diabetes. If someone is looking for a “cure” which will still require people to take insulin shots and check their blood sugar on a regular basis, or if the complications of diabetes still remain a significant threat - would people really accept that as a “cure”? Of course people can have different views, but it strikes me that those walking the diabetes cure walks and donating money for the cause or not doing it so that we can reduce the insulin shots from 6 times a day to 2 times a day, or something of that sort. They, and we, want to feel like we are free from the disease.

14

I have to say cure. I think we are at a time where a cure needs to be found. Diabetes has become big business. Too much is focused on making our lives easier. Any new gadget can make our lives easier but it will never cure it. Despite what they may come up with next…glow in the dark insulin, a meter that is only 1 inch long or 2 second test strips… I will still have to check my blood sugar, count my carbs, take my insulin and deal with highs & lows. Not to mention the ever rising cost of everything. Like Kelly said, just because all this new stuff is available doesn’t mean we can all get it. Although I don’t see much hope for my lifetime, please find a cure for my son’s.