A couple days ago I posted a video introducing an organization called the Juvenile Diabetes Cure Alliance. It's a hip, smart group of young folks who (mostly) have Type 1 and are working to get what they call a "practical cure" by 2025. I like it, and watching the video made me think about where we are these days on our road toward a cure.
My personal feeling about a "cure" is that I wouldn't mind still having to do injections, wear machines, take pills, use a nasal spray... as long as whatever I'm doing actually controlsmy blood sugar. Smart insulin, artificial pancreas, islet transplants that require periodic "boosters"... fine. I think this is what the Juvenile Diabetes Cure Alliance is getting at. So what's the best way there? Donate money to a big, well-funded organization like JDRF? Or to a young and nimble group, like JDCA? Or to some specific researcher?
Anyone have thoughts they can share with me about this?
P.S. Since first writing this post, it's been brought to my attention that JDCA is entirely funded by its owner, Brian Kelly, and does not solicit donations. The video specifies that, and in my musings I forgot about it.
I think that a cure is possible BECAUSE of those reasons, Brian.
How much would you pay for a cure? If I said "take this pill and you'll be cured of diabetes." How much would that pill be worth to you? How much would your insurance company like that? And, the race is on...Sanofi, Novo-Nordisk and Ely Lilly want to be the company that creates that discovers this cure and is able to deliver it to the market.
Interesting you should bring this up, Mike. I asked the same question (What would YOU pay for a cure) in my very first discussion on Tu back in 1998. To be honest, I was surprised that lots of people wouldn't go to extremes (mortgage a house, take out loans, etc) to rid themselves of diabetes. I had also added a time-component to the question, i.e. spending time in a hospital for treatment away from "regular" life.
Just for your information Sanofi Aventis licensed CureDm's "Pancreate" almost two years ago and has done nothing with it. They don't even have it listed on their webpage as a product in their pipeline. I spoke to Dr Levetan who was part of the Curedm team and she was so excited about the therapy and felt very confident it would pan out as a cure for diabetes, She was anticipating the human trials to start late 2010. Well its nearly 2012 and its nowhere to be found. Dr Faustman seems like the only legit researcher to support. At least she's running her trials and not dealing with Big Pharma who seems to keep shelving every promising therapy they get their F****G hands on.
Gary, take a look at this link (which I posted elsewhere in the this thread): http://www.businessweek.com/news/2011-12-21/teva-pursues-first-type...
I don't know if it's the same treatment as the one you discuss or not, but it seems to have bounced around from big pharma to big pharma, until it settled in the hands of an Israeli company that appears to be pushing it forward. It's not a cure and it doesn't have a sexy name, but if I can take injections of DiaPep277 instead of insulin and not have to worry about blood sugars or constant tweaking of my doses, that would be a HUGE improvement.
That is a different therapy. Pancreate is/was a regeneration therapy similar to "Exsulin" Ingap peptide. They were planning on pairing it up with an Immune drug like Diapep277 to achieve insulin independence with the hope that a combination therapy would do the trick. I am aware of Diapep277 but from my understanding its a therapy that targets only newly diagnosed. I still don't really understand that concept of newly diagnosed as yes they have some beta cells still functioning but how long will that last before the Immune attack does those patients in? Something like Diapep277 is supposed to help keep the attack at bay prolonging the inevitable. My hopes are still in Dr Faustman but deep down I just don't think that BCG on its own will be capable of stopping the Immune attack and also allowing our cells to regenerate enough to eliminate the need for Insulin. It would be a miracle if that was the outcome even if we needed it weekly or whatever. Either way I think Dr Faustman will eventually figure it out despite the fact I wouldn't be in shock if it ends up as a failure.
I agree with you, although I think JDCA might actually be the answer to your "Big Business" concerns. It's very small, has one concrete goal, isn't diffusing funds into hosting events, etc. I'm a supporter of JDRF, but for the same reasons you list above, I'm also getting interested in JDCA.
I also agree 100% that diabetes is as much a mental battle as a physical one. No matter what my blood sugar is, I'm okay as long as I manage to maintain a positive mood. When that goes, I'm sunk.
My name's Drew and I'm apart of the JDCA and featured in the video. I wanted to clarify a common misconception that we DO NOT solicit or accept donations. We are funded entirely by the generosity of our founder, Brian Kelly.
Indeed! My initial post erroneously implied that JDCA runs on donations. Sorry!
Given that it doesn't, how can folks who are interested in the organization's mission help support it?
I am constantly torn by who to give my time and money to. I am under constant pressure from all sides to help the ADA, but I can't help but believe that they are a "tool" of corporate interests and have done more harm than good over the years. As a person with diabetes, I often feel like the ADA sees me as a fund raising opportunity rather than someone they should help.
And that feeling runs over to the JDRF. The JDRF was actually created to try to remedy the corruption of the ADA. It was "supposed" to work towards a cure to help us. But in the end, I kinda feel like it also fell into looking at us as primarily sources of money. I get really p*ssed when the few rare times I have called the the ADA or JDRF for help (usually information), all I get is a full court press for my money.
Now truthfully, the ADA is trying to change and the JDRF has made some really visible effort to change. But I consider the whole system "broken." Our government has a compelling societal interest in working towards a "cure," both for T1 and T2. And yet, the current investment by our government into T1 is about $280M. The ADA and JDRF investment (along with other sources) into T1 research is likely greater than our governments contribution. And the organizations like ADA and JDRF are "innefficient," according to one story in 2008, only 35% of the funds given to the ADA actually went to funded programs.
As an individual, we are often unable to give to programs directly. One exception is Denise Faustman. As to whether the JDCA can alter that paradigm, I just don't know. What I will tell you is primarily looking to people with T1 to fund the research into a cure for T1 is Not a solution.
Personally, I consider the funding of research into a T1 (and T2 as well) cure as an inherently govermental function. Why? Because it should involve the redistribution of wealth. The impact on society of diabetes, on the people and the cost to society is at a different place in the ecosystem from where the research needs to take place. Only government has the ability to stretch across that divide and make a rational decision to redistribute the wealth. Diabetes eats up more than 10% of all health costs and the costs are growing. Yet the total outlays for diabetes research represents about 3% of health research budgets.
So, I am torn. I give money to charities that I beleive are trying to do a good job (including the DHF) and I give to charities that not only work towards a cure, but also to help us patients. And yes, I even give to the ADA. But I am not happy, and I am most unhappy with the current system where the ADA and JDRF have too large a role and the governement won't step up to do it's job.
Hello everyone - as some may know, I am also one of the associate editors at the JDCA, and appear in the video talking about a Practical Cure.
I see some people here are asking about that - and yes, the word "cure" without any definition attached to it would be a red flag. But as it has been pointed out, we make a very distinct difference between a Practical Cure - something achievable and concrete that does not rely on a magical formula to restore a person to a state where they did not have diabetes, and an Idealized cure - which is vague, undefined, and is what a lot of current research is unfortunately focused on. We want to help focus efforts back to this Practical cure.
If anyone has any questions about our organization let us know! We are here to answer them.
The problem I see is 2025 is too far down the road for me being I am reaching 50 very soon. That being said I have my Eye on Viacyte. They are working with Stem Cells and noted be able to manufacture an endless supply so that they would hopefully be able to offer the treatment to anyone with diabetes. There was just some headline news that the JDRF is helping support them as they have in the past when they were Novocell. I intend to try and be first in line for this treatment that I believe has a good chance of success. As far as donating money It's basically Dr Faustman at this point. Other groups such as Scott Kings Islet sheet and The Springpoint Project are also worthy of supporting. Though I have given to the JDRF in the past I likely won't in the future and certainly wouldn't give a dime to the ADA
Here's the issue I have with a "practical cure" being something like the artificial pancreas - ACCESS. I see too many posts on here from people who aren't able to reliably access the treatments we have NOW, be them pumps, test strips, or insulin, due to lack of insurance coverage. I've read stories about people who have gone into debt just trying to obtain insulin to LIVE. There are WAY TOO many T1s unable to access insulin pumps, even though we all know that, for many, pumps provide better control, thereby reducing long-term complications of this disease. So when I hear about putting money towards a "cure" or "practical cure," my first thought is whether that money could be better spent just ensuring that we all have access to test strips, insulin, and pumps.
T1 does require constant attention, more so than any other disease that I'm aware of. There is NO END to the constant management this disease requires and being able to "forget about it" does sound enticing. I would love to be able to go to work each day and not worry constantly about going low. Or to get into my car and not have to check my BG and then wait if I'm too low. Or check my BG after lunch, see a number of 200+ and feel horrible about what I am doing to my body in that moment. The more I hear about the artificial pancreas, I don't see it as a "practical cure" because it would still require a lot of attention and management. I think Smart Insulin could be a practical cure, but would it be accessible to everyone? Dr. Faustman's work looked hopeful, and maybe it still is, but that too seems like a long ways off. And it might just offer something that helps us obtain better control.
But there's one small thing that would make living with T1 A LOT easier for me - more accurate BG monitoring. We all know about the inaccuracies with CGMs and traditional meters. I know I've personally ended up dangerously low or high on more than one occasion because of the problems with these devices. My little meter today is no more accurate than the one I was using back in 1983! Why hasn't that changed??