Has anyone else heard the big news with the re-focusing of the JDRF? They've made a bunch of public announcements about how their changing their goals, funded projects, and logo, while pushing the idea of trying to get people to better manage their diabetes.
Sounds good, right? There's just one problem...
Their new tagline is " Improving Lives. Curing Type 1 Diabetes."
...I don't think I need to into why that new logo is both misleading to just blatant false advertisement, as based on their new direction, even more funds that are donated would get moved from "cure projects" to "treatment projects". If you're going to go in this new direction, you can't keep making people believe that what you're after is a cure if you're really not ( though it's certainly far from the first time the JDRF has had...er..."misleading" advertising).
My organization ( Juvenile Diabetes Cure Alliance) has written an article (http://www.thejdca.org/wp-content/uploads/2011/11/JDRF-Rebrands-and-Changes-Logo.pdf ) explaining why we think this is a big step backward in addition to being somewhat deceitful, but I want to hear from you guys. The JDRF received a ton of flak last month for their "1 in 20" ad, and I wonder is this will only add to it.
Has anyone else been keeping track of this? What do you all think about this new direction?
I also read the article that Kim linked. I agree with Scott. I think even though most of us would also like to see a cure happen, we also need to be able to live with disease until that happens.
Even there were a lot of people upset by that ad, there were also a lot of people that supported that ad. The JDRF explained how they came up with their numbers. I personally believe that number is higher than 1:20..
I think putting Improving Lives in there they are clearly showing that they are not focused ONLY on a cure. Note that they also made it 2 seperate sentences, as in they are two seperate things. It certainly would not be a good line to say: "Trying To Make Diabetes More Livable. Finding Treatments For Complications. Curing Type 1 Diabetes." . How do you put everything they are trying to do into a nice little tagline that is easy to remember? I think Improving Lives does that pretty well, actually.
I can't wrap my head around why you would consider this blatant false advertising.
I disagree that the refocusing the JDRF is a problem and I would support doing more for treatment projects. I think the average A1C of PWD is something in the 9s? A "magic bullet" would be great and all that and I'll run out and buy one when the price/ side effects are right but I think there are significant dividends available by investing in changing goals flexibly so people can learn how to kick more ■■■ and then go out and kick it.
Quite honestly I appreciate their new direction. As someone who saw diabetes take a kidney, partial eyesight, two legs, and then finally life away from my aunt (who had been diagnosed at age 9, passed away at 50)....I appreciate anything that is done to improve our ability to control this condition and prevent complications.
I was 'promised' a cure 19 years ago, when I was diagnosed. I was told it'd be here 'in 10 years'. It wasn't. I don't hold out much hope that there will be a cure in my lifetime. Is it fair to put all the money into a cure that many of us may not live to see.....but put very little or nothing into improving our lives? Frankly, no.
Kari - Well stated. Balance is important. And these two goals are not mutually exclusive. Improving people's lives could expose a path to a cure. Finding a cure will improve people's lives!
Hi Nick: I really agree with JDRF's new direction and re-branding. I think it is great they are moving away from the "juvenile" label and acknowledging the 85% or more of us adults who have Type 1. I have really appreciated their efforts to reach out to adults--I attend a JDRF-sponsored Type 1 women's group, and I am so grateful for it. I think that technology is going to be "the answer" before a true cure occurs.
I also don't have a problem with JDRF's ad in the NY Times and Wash Post, the 1 in 20 ad. Why do so many parents of children with T1 do blood glucose tests in the middle of the night? Because "T1 dead in bed" is a reality. Just because it is horrifying and scary doesn't mean we shouldn't shine a light on it (and while we are at it, let's look at diabulimia and suicide by insulin OD).
I have been quite critical of JDRF in the past, because I think a lot of the medical community's blindness regarding the frequency of adult-onset Type 1 diabetes was because JDRF promoted the "only children get Type 1." But JDRF's present moves and direction are positive in my opinion.
While we are focused on a cure, we realized it's not the top priority for several other organizations. New treatments will not stop being created, and they shouldn't stop being created. I know my diabetes improved tremendously when I switched from shots to a pump, and am grateful minimed is still cranking out knew additions.
A large amount of our issue has to do with the methods of advertising they use to achieve funds for this end. For instance, they sponsor "Walk for a Cure," yet a cure is there secondary goal. More to the point, on average, barely ten percent of all the money gained from their fundraising goes to a cure, yet their messaging plasters the idea of one on all of there events. At best, this is misleading. At worst? Well...
I did think the opulence of a Walk For a Cure Event I went to recently was sort of astonishing, buses from parking area(s!) to the starting line, inflatable ball pits, bands, stages, loudspeakers, etc. It made me wonder more about the administrative cost they'd incur but maybe that stuff all got donated anyway? It's fun to kvetch about but how else would we cure diabetes? Of course, now that we are out of Iraq, we could pour that money into a cure instead of cluster munitions and death benefits for soldiers. We could even look at a "long term plan" like "if we cure diabetes, we could sell the cure worldwide and regain some national initiative, perhaps we could RAISE TAXES to pay for it? Oh wait, we are the country that can't do that.
As someone who was diagnosed with Type 1 in my late 40s, I welcome the JDRF's acknowledgement of something they have surely known for years, that you don't have to be a child to be diagnosed with Type 1 diabetes.
One other issue I would like to present is that JDRF are changing their tagline here, but I wonder if they will also be renaming their Fundraiser events to more accurately reflect the truth either:
From "Walk for a Cure" they can go to "Walk for a Cure, but only half of it is going for a cure" or maybe even "Crawl for a Cure."
When all is said and done, isn't it simply entirely unfair that people who are donating money specifically for a cure are not having their desires met?
No. "Cure" could also be construed as improving affairs for people with diabetes and there is *A LOT* of room to improve strategies and tactics and, for that matter, communication with insurance companies and medical providers to streamline those interactions. I think that advocacy for improvements to care is a very important step that our public organizations should act for. I would be more inclined to support the JDRF knowing that they are changine their tagline to broaden the focus away from curism.
Melitta -- thanks for this. You and I share our obsession regarding the misdiagnosis of adult-onset Type 1 and it sounds like we also shared a critical view of JDRF. I know if you have observed JDRF moving toward embracing the adults with T1, I'm going to take another look at them. Thanks!
I heard someone say that research into how to live with diabetes sheds light on diabetes itself, which helps us figure out where to look to find a cure.
So, really, all research to help people live better with diabetes can help us find a cure, albeit indirectly.
I, personally, like this new emphasis. How can we find a cure if we don't know much about diabetes? We don't even know for sure what causes people to get diabetes! (Remember: correlation =/= causation.) We need to focus on both finding a cure and on helping us deal with it better until a cure is found. All emphasis on one or the other is foolish, in my opinion. But I acknowledge that I am very, very much biased. I already have diabetes, and I want to manage it better.
It seems the common denomenator is type 1 or type 2 its Diabetes and its on the rise. I have a son that was told he's type 2 at 16 and almost died from DKA 2 months ago at age 21 now and we were told is type 1 now. The only thing on our minds at this point are how to take care of it and support the cost of what he needs with no insurence. I have friends that just found out they have type 2 and had a father that was type 2 after the age of 50. It doesnt even seem it has to run in the family anymore to end up with this desease. I know from watching my son when he was younger exercising helps keep the numbers down and A1C to. I pray theres a cure but onestly more worried about how to cope. I'm slowly finding ways to get what my son needs to try to get him help. He has neuropathy since they sent him home on insulin 4 days after being in ICU. Unforunantly me hating this desease wont take it away from my son but I will fight to help him and others to survive with the tools they need. thanks for starting this chat its been very enlightening. Ignore my spelling never been very good without spell check. Love in christ Kimberly
I see where you are coming from. Certainly, people need to keep themselves healthy and make smart decisions, because this is a dangerous disease.
But if diabetes remains a chronic disease without a cure, won't we be paying the same costs and trying just to cope for the rest of our lives? The Diabetes product companies certainly won't mind, as they will continue making profit on that. But the only way, in my view, to live without the fear of what tomorrow may bring, whether that may be directly related to health complications or financial problems, would be to find a cure that would allow us to live a cure-like lifestyle and not depend on so many products and supplies.
Lets not forget all the millions around the world who also have diabetes, but do not have the same access to resources or even basic necessities as people in other countries do. With reports that the number of diabetics is on the rise, now more than ever we need to get more focused on the search for a cure. It would be the only way to save hundreds of thousands of lives.
I find it hard to believe that this cure would be available to the same people who have poor access to resources or basic necessities. In order for any group to get this cure through the regulatory hurdles required to the point patients can use it there is going to need to be an awful lot of money involved. Any investor putting money in to developing such a drug would expect ROI. Even JDRF with their deep pocket books need industry partners. I really question how acheivable it is to even partially expect these types of people who have a problem getting basic necessities would have access to this cure.
I am all for not having to depend on so many products or supplies but I think there has to be an understanding that this cure is not going to be to the point patients can use it for some time. What to do about it until then? Should we just let the people who have complications take the "hit" for all of us that will be lucky enough to get the cure before complications? Should they take the "hit" to prevent everyone else from the point of a cure forward from having to deal with diabetes?
You can see how many people respond to these posts in favor of researching it all (cures , complications, better management etc). I am sure JDRF got sick of hearing everyone in favor of a broad approach and thus the change in focus and the rebranding.
