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 guess I could deal with "pop a pill and forget it" treatment, like I do with my thyroid, but I would really like to get rid of the insulin (however you take it), the constant attention to food and weight, and exercise, and the constant fear of lows and highs. A true artificial pancreas which was based on accurate BG measurements might be acceptable, but if it was something I had to wear, rather than have it implanted, I would not really consider it a cure. Even an implanted artificial pancreas is still something that needs to be monitored and refilled, and what I want is total freedom. :-)
I watched the JDCA and was unclear about what they actually do (seeing as how it didn't look like they do research themselves) as well as where exactly any donated money would go.
I agree with you. I don't care about having to prick my fingers or take shots or wear a pump. Those are not a big deal at all to me. The hard part about diabetes is keeping blood sugars in a good range, and all the measuring/calculating that go along with that, so anything at all that would help make that easier would be a step in the right direction as far as I'm concerned. A "practical cure" would have to keep blood sugars in a decent range (say 80-140) a vast majority of the time, like 95% of the time, and would have to prevent severe highs/lows even when blood sugar went outside those ranges. Ideally there would be something like an implantable artificial pancreas that would just need to be filled with insulin/glucagon/other with an injection or infusion every month or something, and otherwise could be pretty much forgotten.
I'm with u here. I don't mind having to do all of the stuff I just want some sence of bs control and if it involves ny of the things u mentioned then that's ok with me. I honestly don't know if I could just do nothing b/c diabetes has been such a part of my life for so long.
I am very suspicious of big organizations. The diabetes organizations, such as ADA, JDRF and I am sure the new JDCA would be included in the list. I think their missions become too broad, and their projected goals are so overblown that they cannot function with a clear goal/ Also, because they are so big, their funds are heavily consumed in administration and delivery, rather than tangible results.
Having said that, the use of the word 'cure' is a huge red flag for me. I am comfortable with being an individual with diabetes. Diabetes does not define me, but rather, is a unique part of me; one that few people have and fewer people can relate to the condition. What I would like to see is to have diabetes manageable enough so that those who struggle with acceptance of the disease could more easily cope with their diagnosis. Diabetes, in my opinion, is as much of a mental condition as it is a physical disease.
So if you are skeptical of all these organizations where do you suggest people donate money to affect a change? Is there some place that you are aware of that does not have heavy admin costs that is for finding a cure? Curious if you have been able to locate one.
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.
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.
Hi Jen. This is a common confusion pertaining to our mission: we DO NOT accept donations. We are funded entirely by our founder Brian Kelly. Our main goal is publish reports, research and investigations pertaining to the current state of the diabetes charitable universe. Essentially what this discussion is focused around is what we do - try to understand the state of cure progress, what things are working/what aren't and trying to advise people where their donations can be used most effectively. Thanks for watching!
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
Thanks. So the JDCA is something like a rating agency for projects aiming at curing type 1 - giving advice where the money is donated with the highest effectivity? The only question I have is that in the video it is said the collected data is availabe for members of the JDCA. Would it not better to make this information available to the general public: the ranking of best approaches and the scientific foundation this ranking is based on?
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??
Thanks for this, I have since gone through many of the reports. They are helpful. I think this is a useful service for those of us who give money. In many cases, the diabetes charities (ADA, JDRF, etc) have become big business. It is startling to find that 22% of ADA's funding is spent on fundraising. In fact, only part of the ADA income is raised through fundraising (perhaps 50-70%) and big chunks of that funding also comes from big corporate donors (notice the whole page of donors giving $100K-1M dominated by corporate interests.
When I give one dollar to the ADA, I actually expect that less than half of it actually will make it to fund research or provide charitible benefits. Less than half! That is really wasteful.
I find the information from the JDCA very useful. It supports what I have felt all along. As a donor, I would like to know how my next marginal donation dollar will be spent, not exactly what the JDCA can answer, but close.
ps. I still think the ADA and JDRF should just get out of the way and fund this research from public funds.
Thanks for reading the reports bsc. Even if I didn't work with the organization, I'd still think these reports are a great tool for crafting a better understanding of this tremendous, even growing, diabetes charitable universe. Above all I think that harnessing a suitable amount of skepticism towards some of these organizations is very important, and will go a long way towards keeping them honest.
I'm glad you find the entire premise behind our little not for profit useful and hope you will continue checking back on reports. Most important in this thread is not our organization however, but rather trying to measure people's notions and understandings of the current state of diabetes charities and cure progress and building a constructive discourse around it.
Hi Holger Schmeken. All of our reports and information are available publicly at our website. In order to receive reports when they are released all you need to do is sign up for the Alliance mailing list. You can find all current reports and investigations here.
That is a really excellent point and I agree 100%. The artificial pancreas is NOT a Practical Cure, and I think most people agree with that - some just see it as the best alternative we might have right now. The argument you make about all the different expenses associated with diabetes treatments is exactly why we need a cure - one that will remove testing and carb counting and diabetes complications.
