We posted a new report over at the JDCA: about the differences between a Practical Cure for type 1 diabetes, or something with real, achievable goals that we can aim for, and an Idealized cure, which is pretty much the vague, undefined cause the major foundations use funding for.
So I want to hear from you guys - what do you think? Pretty much all of the major foundations do not have any clear or specific objectives when it comes to the donor money they are investing in the search for a cure. On one hand, yes, there are many things you can not predict in the research labs, but then again, that should not be an excuse to throw all this money into vague and undefined causes. Unless we get the foundations to start making goals and setting timelines, this is going to continue for the foreseeable future and we are not going to get closer towards a cure.
If you are a donor, or if you ever plan on dating money towards type 1 research - wouldn’t you be more comfortable knowing exactly where it is going, who it is going to be helping, what they are working on, and what objectives they hope to meet? Or would you simply be ok with dropping the money “For a cure” and letting the foundations use it however they please?
I for one would definitely require the former - but let me know what you think.
I like that you’ve differentiated the two and made clear definitions of each. I’ve heard so many references to a “closed loop system”, “artificial pancreas”, and “cure” being synonymous, and to me, they’re not. To me, anything that involves an external device, ongoing injection/infusion of an externally grown or synthesized hormone, or specialized routine behavior for the patient is not a cure, not of any type.
With regards to your definitions, testing BG once a week, not minding diet or overnight BGs would certainly be welcome, but I would say the above criteria must be excluded as well. What differentiates, in my mind, a “practical” versus “idealized” cure is whether any maintenance is needed to prevent the diabetes from recurring. For the practical sense, this may mean periodic doses of a drug that prevents the destruction of insulin producing cells, or perhaps the periodic injection/replenishment of such cells. (Immunosuppresents, though, in their current form would be excluded as the side-effects are quite significant). Once a week BG monitoring would be acceptable to me, but I don’t know what value this would add other than to determine if the diabetes has “come back”.
If a so-called “cure” gets a patient off of insulin for about ten years, but then it comes back, would I really call that a cure? Yes. But I’m not sure how it would be categorized under the two groupings you’ve specified. It’s like an antibiotic – it may cure a bacterial infection, but there’s no guarantee that the same bacteria won’t make you sick years later.
Personally, I have no problem funding idealized cures. I have donated to Dr. Faustman, and I think the research she’s done to date should be followed through as it does appear to show promise. I do understand your concern, though, about donating to the generic cause “to cure diabetes”. I recently participated in a JDRF walk and donated to that cause (and solicited friends and family to help as well). While I admit that I don’t know what they are really putting the money towards (I’d much rather contribute to Dr. Faustman), JDRF has done good things simply in bringing people with T1 together and being a loud voice of advocacy. And I have to trust them that they will put the money to worthwhile causes – multiple ones – because putting all your money into one researcher’s dreams may prove to be a let-down in the end.
My daughter is db1, I’m an engineer.
My heart would say cure her pancreas, but thinking practical we should first have a mean to live better and than focus in prevention and cure.
A closed loop requires a far better CGM, perhaps implanted and one-year-lasting, and a faster insulin action (perhaps in vein directly). Thats not a cure but if you put 80% of money and sponsor forward that direction you get there in 5-10 years (I mean, time to market, lobbying FDA included).
You are not cured, but can live better and looking forward no complications. Then you can put 80% on base research and find a cure, having people safe.
In a war you could have much more soldiers, but if you spread them all over and your enemy move all of his faster, battlefield by battlefield, you loose all the battles and the war at last.
One thing I think the JDCA and other organizations should advocate is improving goals to more normalized BG? It is also critical to use that as a positive thing, not to beat people up who don’t make it but set expectations that where there’s a will, there’s a way and to figure out what the way is to get people aiming at “normal” rather than the current goals. If I get an “artificial pancreas” that is aimed by the manufacturer/ AMA/ ADA/ whoever to get me to 140 post-parandial, my A1C would go up and I would prefer that it doesn’t!
I think that a more reliable and accurate CGM should be a goal more than a “closed loop” system. I can do the math with my pump but getting the numbers to read correctly seems to be the bigger problem. I would rather drive my pump myself.
I’ve done IV shots before, not so much recently but every now and then if my BG gets really high, I will knock it down that way. It’s really reliable but I don’t think there’s a lot of margin of error and I sort of suspect that would be too dangerous for the FDA’s taste? Even small controlled doses are like “woah” if they are a little off.
IV given insulin is faster to start and faster to go away. An alghoritm controlled pump needs this as well as an accurate and reliable CGM. These things + pre-bolus (with approximate CHO counting) + glucagon as last resort error correction or safety guard would mean everyone can reach A1C without much thinking about it, and reach I think well lower that 140 post prandial.
These things are not far away to build: i would like to have them resolved and ready and only after go down the way for a cure, investing in many directions to find a way out.
In the meantime research for a cure should continue, but with more focus having not much money.
Thanks for your comments everyone - you all raise some good points.
Scott: Yes, those are interesting scenarios. I think that most diabetics would gladly accept a cure that would require them to check their blood sugar only once a week as opposed to several times a day, A reasonable insulin regimen along the same lines would be welcome with open arms as well. But is it really a “cure” if the diabetes has a good chance of coming back? It gets highly theoretical at this point.
One thing that is pretty certain I think is that we can not revert time and restore a person to a point where it was as if they never had diabetes. It would be great, but unrealistic to expect a magical formula that would never require a (former) diabetic to check up on his blood sugar every once in a while. Nor am I aware of any credible scientists that would make such promises. I think we need to support researchers who are focused on something ambitious, but achievable. At the end of the day, it is all about seeing some results - hopefully in our life time, and hopefully soon.
As far as our stance on improving BG levels and better pumps: The thing is, we are certainly not against diabetics living a healthier and more comfortable lifestyle. We want people healthy. However, there are many organizations and experts that focus on this area of diabetes management, and do it very well. Our niche, however, is focused specifically on the search for a cure. Same reason as to why we are not involved in type 2 issues - although we in no way want to trivialize this disease, we feel that if we are focused solely on one cause, such as a cure for type 1 diabetes, we will be more effective and hopefully help spread the message. This is one of the things that makes us unique - there are no other advocacy organizations strictly focused on a type 1 cure that I am aware of.
The purpose of our report is to get people thinking about things like this. It is great that people donate, but can we make sure we are donating in the right places, and that the money is being used in an effective way? If there is a real, achievable, Practical Cure in the framework - we want to make sure we do not miss that chance and give it our full support.
Ancient romans said “Divide et impera” that’s “Divide and conquer”.
I read a book “What customers want” about techniques to drive innovation in the industry and other fields.
It’s important to focus and kill bad projects and research as soon as is possible to move money in projects with more foreseeable success.
