We have had a number of good discussions on here about how diabetes resources should be used, and a lot of people agree that neither treatments nor cure research should be ignored. However, did you know that from the money the four major diabetes foundations rise through type 1 cure fundraisers, only 35 out of 330 current clinical projects taking place focus on cure research?
The JDCA released a report that explores the issue here: http://www.thejdca.org/wp-content/uploads/2011/12/Type-1-Human-Clinical-Trials.pdf
Based on our definition of a Practical Cure, that number is even less. What is more, not a single clinical trial has made it its mission to find a cure in our lifetime.
People are frustrated that we have been hearing about a cure for so long but nothing big has really happened. And it's true - after 250+ years of combined (between the four foundations) research, we still do not have a cure on the horizon. Type 1 is a hard disease to figure out - and having only 10% of projects focused on it will not change that fact.
We absolutely need to make it known to the major foundations that they can not continue taking donation money specifically given for the search for a cure in our lifetime, and not using it fully for that purpose. This strategy helps no one but the diabetes industry. We need to change this direction now.
I actually hope for a "vaccine" before a cure, well a cure would be great don't get me wrong. It would most like benefit move people in the type-1 spectrum to have a vaccine first. This is for a number of reasons mainly a cure would require you to develop T-1 first and after going through DKA when I was Dx'ed I wish that on no one. Cures can be expensive and are something Big Pharm can/would hold over our heads. Vaccines tend to be cheaper due to the mass appeal of them. From a selfish stand point I can handle being T-1, I hope my children or anyone else's children never have to deal with it. As for money going to management I am all for it, if you can't put out a fire you look for ways to contain it. I think to much money has been thrown at times to finding a cure, when things like making day to day management easier and cheaper are just as important. Many of the major groups have made a point of publicly shifting direction recently.
I really don't think R & D for a "cure" for Type 1 is being taken seriously. The big Pharma companies make too much $$$$$ with producing new drugs for Type 2. It seems that every other week a new drug goes on the market for Type 2 treatment. Considering the fact that world-wide 95% of Diabetics have Type 2. That is where the $$$ is being spent. We Type 1 diabetics just have to realize we are the "orphans" when it comes to major $$$ being spent on a "cure" for us.
There is a TON of money to be made on scrips for Ds. When each test strip costs a dollar, not to mention the big ticket items like pump and CGM supplies, why would the pharms even care OR spend a penny to cure it. My last three month supply of pump, CGM, insulin, test strips was almost 3K or 12K per year. Eight of us (almost) earns them a million per year. Why cure it!
I really feel that any discussion of a cure requires an analysis of the drug pharms and political action. Can we strike? : ) We should.
This is a huge issue. Maybe we should talk......
I agree that the pharma companies should also be doing more - I think most people who have seen the big picture realize that this is a business to them, so while not morally right, you can understand it.
What is alarming though is that this 10% is based specifically on money donated to charity foundation for the purpose of finding a cure. If even these organizations are not pushing hard for a cure, who will?
we still do not have a cure on the horizon. Type 1 is a hard disease to figure out - and having only 10% of projects focused on it will not change that fact.
I think we also need to remember that all diseases are hard. Thus why no disease has ever been cured. Ever.
Autoimmune diseases are especially tricky because of the role that the immune system plays in the body. So much is not known about why autoimmune diseases work the way they do. Many autoimmune conditions seem to fall into this "hard to cure but someone easy to manage" bucket - Celiac's, Chrohn's, type 1 diabetes, rheumatoid arthritis. It's easier to come up with ways to treat the symptoms of these diseases than it is to halt or reverse the autoimmune process.
For me, I have concerns about the artificial pancreas project because it still relies on a significant level of technology and management. I would almost consider "Smart insulin" or some sort of medication that helps regulate blood sugars more of a cure. I would even accept something that restores a partial ability to produce insulin and would still require me to take insulin and check my BGs, but maybe with less accuracy and vigor.
One other big point is that all studies are likely not funded evenly. It could be that the 35 studies looking for a cure receive 90% of the funding or it could be that these 35 studies receive less than 1% of the funding.
I think dollars may be a more reliable way to measure this as it more likely equates to researcher man-hours. The other big point is you need to fund someone with an idea that is worth funding. If these T1 foundations don't have anyone asking them for money to "cure" T1, then there is no way they can fund it.
It is interesting that you bring up this point, as we will be posting a follow-up analysis on this report that will get into this issue. Stay tuned.
Oh but GIVING money for a CURE sounds so charitable.
If I were the executive of a big pharma, why would I ever choose to do research for a CURE?
We know all this subliminally. We need to think slow, think thoroughly, and know that almost zilch goes for a cure. A cure has the potential to stop officers' bonuses.
I would personally donate more money if I could donate it directly to Type 1 research.
I give to Diabetes UK (the big one here) and get very frustrated that nearly all my money seems to be spent asking me for more money.
I'd like the option to give directly to the research minus a very small admin fee possibly.
Of course this raises issues as to who has the rights to the research and patents.
This is one of the reasons I hate all this "good for the economy" talk that's going round at the moment as me having diabetes and needing mediaction and equipment etc all adds to countries' GDP.
As does people eating too much etc, etc...
I think you hit the nail right on the head. The major diabetes foundations are great at marketing and promoting their fundraisers, yet they could be doing a lot more when it comes to actually using that money for type 1 research, as they promise.
Part of the problem is that there is little pressure on them to show results and explain specifically how they are using the money. This is something that we need to change if we want to see a serious commitment towards the search for a cure.
People should be aware that when they donate to large, established organizations, their money goes to administrative costs & to raise more money. Many organizations pay professional fund-raisers, if they don't already have them on staff.
I donate directly to diabetes researchers. Other contributions go to small, grassroots organizations. Someone sends me glossy marketing material, it goes into recycling. We never donate to institutionalized groups.
How do you go about donating directly to diabetes researchers?
Are there problems working out who are legitimate and trustworthy?
I think there’s still some value in what the big organisations do with your money.
I really don’t see how major research independent or the pharmaceutical companies will happen without the big charities being involved.It would be difficult to get enough publicity for raising the money for a major research program without them.
You’re likely to be a member so I don’t see why they don’t let you specify what your preferences are for how you want your donations spent. They can then use this in helping decide what to fund.
For example I’d rather money was spent preventing children from having to suffer diseases rather than funding days out for them, but many organisations don’t see it this way.
A lot of fundraising generally seems to spend 1000 to raise 100. The argument is that the money would not have been donated otherwise. Someone spending a fortune on travel, hotels, clothing, equipment etc to run a marathon or put on a dinner or something would often just be better off giving a fraction of what they’ve spent to the charity instead.
I think it’s understandable to want to be selfish and actually use your money on something you might benefit from in the end.
Better than spending it on complete rubbish from the shops.
I've been following the work of some researchers, like Dr. Faustman http://faustmanlab.org., to know they're legitimate.
I completely agree that more of the donated money needs to be spent in the research labs - after all, that is what it is donated for. If the foundations do not respect the donors wishes, those donations will dry up, and we won't get anywhere near a diabetes cure.
At the JDCA we actually have a report on Industry Expense Models that address exactly how much each of the four major US foundations spends on fundraisers.
I encourage people to read the full report, as it is very interesting - but in terms of money spent on Fundraisers alone, it reads: (Number in millions, % is the total of its donations being used for fundraisers)
ADA - 43m or 22%
DRIF- 2m or 15%
Joslin -4m or 4%
JDRF - 21m or 11%
TOTAL from all 4: 70m or 14%
So while 14% of total donations is not a massive number, more of that money can certainly be used for research.
I'm sort of torn, obviously a cure would be great. At the same time, I think that there's a lot of room for advocacy/ education and other programs needed to help people who have diabetes *right now*. The sixuntilme account of the "artificial pancreas" seemed to include enough hardware to fill up an R2D2 sized "companion" (although perhaps some of the gear was for "telemetry"?) and the reporter also reported that her trial was "cut short by vomit", which doesn't seem to be a huge improvement over the pager sized gear I'm currently lugging around.
In some other thread I took a look at the average A1Cs in a bunch of different regions @ Tu and the "average" A1C seems to be in the upper 6s to low 7s, pretty much across the board, with outliers at both ends of the spectrum. This doesn't meet the recommendation (is it ADA or American Association of Endos? Sorry I can't recall this...) of 6.5% for A1C so even in our community, there's room to improve.
It think that the tactical approach to diabetes could be modified, with a different approach, lower goals, more normalized BG and, when needed, better communication from providers and less ■■■■■■■■ from insurance companies. If the doctor says 12 strips, the insurance company's doctor has NO business saying 10 strips because of some idiot at the American Medical Association. I've run into that repeatedly and it always annoys the hell out of me. Throwing money to Dr. Faustman isn't going to change that at all and, while I question whether JDRF/ADA/et al are really aimed at changing approaches and tactics, I would like to think that they'd realize that talk is cheap and that if they'd talk more effectively, perhaps people's lives might be improved across the board?