I think that this could be really cool. It could help us out alot with controlling our sugars regularly. Even better than our pumps!
I don't think anyone is against technological advancements - of course this is awesome.
I'm frustrated because it just seems like people aren't really listening to those of us who are disappointed in how things are going here. Go to the JDRF link to register for the walk - "cure, cure, cure". Do you see a disconnect? From this point forward, please JDRF public relations make it perfectly clear to those doing the Walk where their money is going. Many only click on the register to walk link and see they're only raising money for a cure.
Those at the head of JDRF can certainly choose its focus and divide its funds as they see fit.
There are other options where all our money can go directly to researchers focusing only on a cure, and in my opinion an artificial pancreas is not a cure.
[quote user="WestinsMom"]
Is anyone else a bit disturbed that JDRF is funding AP rather than a cure? This is a topic of much interest on other boards, yet a quick glance here did not show anything. Not only that, but that J&J is so involved in the JDRF and now JDRF is helping to fund something that should be all on J&J.
[/quote]
I think it's important for everyone to remember that JDRF funds so much more than the artificial pancreas project. This is not an "all eggs in one basket" kind of move. The foundation continues to support researchers working to develop universal prevention of diabetes onset and eliminate insulin dependence. This is what most of us consider "the cure." And JDRF continues to invest in many different paths that could ultimately lead to this cure.
But in the meantime, many of us are living with the horror of the disease and JDRF's commitment to the artificial pancreas project gives us a way to help T1 diabetics like my daughter Cassie NOW. NOW is important. The artificial pancreas may not be "the cure" but it comes mighty close to one. And getting something this groundbreaking in patients' hands as soon as possible (that's why J&J is involved) is something I think is a major milestone.
~ Red
Thank you to everyone who has posted on this thread. Speaking on behalf of JDRF, we appreciate your participation in this discussion and are thankful to have your feedback on our new partnership with Animas to develop a partially automated first generation artificial pancreas. I'd like to address a couple of comments and points that some participants in this thread have raised.
First, as a few contributors to this thread have mentioned, JDRF's artificial pancreas project is not limited to working exclusively with Animas. JDRF is working with all device companies that develop pump and glucose sensor technology. While we're excited about the partnership with Animas, it is not the culmination of JDRF's artificial pancreas project and efforts. Rather, it is a great development in what we envision as a stream of research, products, and technologies that will be announced over a period of time (the recent BD partnership announcement is an example).
Other companies have looked at similar projects and products, and we anticipate that they will continue to do so. We are and will be collaborating with as many of these companies as possible to realize the vision of fully automated artificial pancreas systems. In fact, we hope that this partnership with Animas will spur other companies to take action and devote additional resources to the development of artificial pancreas technology. JDRF looks forward to working with them to achieve this goal.
Next, a few posts on this thread have mentioned JDRF's relationship with Animas's parent company, Johnson & Johnson. There are no conflicts in this partnership, and JDRF is transparent regarding the relationships of its volunteer leadership to Johnson & Johnson. The volunteer chairman of JDRF, Robert Wood Johnson IV, is on the board of the Robert Wood Johnson Foundation, not Johnson & Johnson. As volunteer chair of JDRF, he is not a board member and not involved in the day to day research activities of the organization; this project did not begin with him. He had no involvement in the decision making process around the partnership from either the Animas or Johnson & Johnson standpoint. The volunteer chairman of the Board of Directors of JDRF, Leo Mullin, is in fact on the board of Johnson & Johnson. Like Robert Wood Johnson, in his role as a volunteer, he is not involved in the day to day research activities of the organization, and this project did not begin with him. He recused himself from all discussions and decision-making meetings regarding this partnership between JDRF and Johnson & Johnson.
Finally, some posts have questioned why JDRF is funding this type of research into an artificial pancreas when its mission is to find a cure. As Red and others have discussed, the development of a closed loop artificial pancreas system represents a "bridge to a cure" that can dramatically improve people's lives, and it's something we can accomplish in the (relative) near term. The JDRF artificial pancreas project website features a number of videos that explain not only how this type of mechanical device may improve people's lives, but also how it may ultimately play a role in the development of a biological cure. I invite you to check them out at: http://www.artificialpancreasproject.com/videos/default.html.
While the artificial pancreas project and the recent partnership announcements have generated a great deal of excitement and attention, it's important to keep in mind that this area represents just a small percentage of the research JDRF funds. Last year, JDRF's total research funding was $101 million. Of that, approximately $6 million went toward glucose control, which includes research related to the development of an artificial pancreas. The remaining 95 percent went toward biological cures including halting and reversing the autoimmune attack that causes type 1 diabetes; regenerating and replacing beta cells; and preventing, treating, and reversing complications. While the amount of funding for glucose control will likely increase this year with these new partnerships, we still expect the vast majority of JDRF's funding, well over 80 percent, to go toward biological cures. For JDRF, the artificial pancreas is not an "either/or" proposition. We're able to focus on improving people's lives in the near term and bridging the way to a cure, while continuing to focus on our ultimate goal of curing type 1 diabetes entirely.
Thanks again to everyone for your feedback, and I'm glad to try and answer any other questions.
--Gary
Gary, I thank you for stopping by, but I have a few questions for you.
1, How can the AP be considered a 'bridge to a cure' when the AP is a technology? It really has nothing to do with a cure. Its similar to tell those that use wheelchairs that they are 'cured' or someone that uses a prothsetic hand/arm/leg that they are 'cured'. We need better techology, but by calling the AP 'a bridge to a cure' but a lot of false hope in people.
2, Woody Johnson is the heir to J&J, is he not? He was also the CEO of JDRF at one point, was he not? the current CEO, Alan Lewis, is also involved with J&J, he is not? How can this NOT be a conflict of interest?
I was disappointed that this wasn't what I had seen on TV last summer. A news program on ABC (I think) showed a clinical trial with a teenage girl connected to the pump, CGM, and AP. She was exercising, eating, and never had to touch the pump. The AP was managing it all (that said, it was about the size of a notebook computer). I was sad that this release indicates that we'll still have to bolus, set our basal rates, etc.... I thought that Artificial Pancreas was going to be a lot more than that. Don't get me wrong, I will take what I can get for my girls (both dx about 3 years ago), but wish clinical trials didn't take sooooo long!!
It is sad to see so much energy going toward JDRF and the AP project. Particularly since it appears that most doing the bashing are not aware of what has been accomplished and discovered so far in the AP project.
The JDRF efforts are immense and quite diverse. Many projects that have been funded have produced technological and biological advances that make the AP, stem cell to islet cell production, autoimmune management and the biology of how the islet cell and the supporting bio-systems interact.
It sounds much like the frustration, fear and lack of awareness have gathered together to guide the emotions for the T1Ds, parents and family who may not yet understand what is happening to get us a cure for this pain in the ass condition.
Please go to the JDRF site and see what is happening and what has been accomplished.
I say, thank you JDRF and all those who are getting us closer to a cure! I do remember how far we have come in the last 40 year I have dealt with this challenge. Today there tangible things leading to an easier life, controlling the onset and autoimmune attack and an artificial pancreas to help us live a better life to name a few.
Here is a list of legitimate things to bash:
- A study was published by a PhD in Toronto, Canada, promoting the fact that using Insulin aspart and insulin glargine is no more effective for treading diabetes than regular insulin. This is may have a direct impact on insurance companies not paying for anything but regular insulin.
- A Kaiser Perm policy in OR is now limiting the number of strips that will be prescribed to T1Ds, no matter what the danger to the patient. The change is being made to the drug formulary. The name is Dr. Sean Eric Jones.
- The dollar to patient ratio for research funding for T1D is low, compared to more "popular" diseases.
- Specific comprehensive patient education is not provided to new T1Ds and the ongoing support is muddled with the other diabetics, despite the unique challenges of T1D.
- The new ADA, Amendment 2008 Act protect diabetics in the workplace and in public and far to many Ds are still told that the cannot carry out "normal" life activities such as testing BG at work or at school.
Let focus our energy to make a difference in for all Ds!
Sorry for the ranting.
[quote user="curet1"]
Gary, I thank you for stopping by, but I have a few questions for you.
1, How can the AP be considered a 'bridge to a cure' when the AP is a technology? It really has nothing to do with a cure. Its similar to tell those that use wheelchairs that they are 'cured' or someone that uses a prothsetic hand/arm/leg that they are 'cured'. We need better techology, but by calling the AP 'a bridge to a cure' but a lot of false hope in people.
2, Woody Johnson is the heir to J&J, is he not? He was also the CEO of JDRF at one point, was he not? the current CEO, Alan Lewis, is also involved with J&J, he is not? How can this NOT be a conflict of interest?
[/quote]
Bridge to a cure and cure are not the same thing and if people are unable to differentiate then that is their fault. If an artificial pancreas is eventually developed that can eliminate 98% of what a diabetic has to do, I will take that 8 days a week. It might not fit the definition of cure exactly but that is pretty damn close. You make it sound like an artificial pancreas will be the end of all research into diabetes. That just is not the case. This is something that has not even been developed but people are ripping into it for unfounded reasons.
If the JDRF were benefitting financially from this then it would be a conflict of interest and moreso if it were an exclusive deal with Animas, since this is not the case, I do not see a conflict of interest.
[quote user="CHLjoe"]
[quote user="curet1"]
Gary, I thank you for stopping by, but I have a few questions for you.
1, How can the AP be considered a 'bridge to a cure' when the AP is a technology? It really has nothing to do with a cure. Its similar to tell those that use wheelchairs that they are 'cured' or someone that uses a prothsetic hand/arm/leg that they are 'cured'. We need better techology, but by calling the AP 'a bridge to a cure' but a lot of false hope in people.
2, Woody Johnson is the heir to J&J, is he not? He was also the CEO of JDRF at one point, was he not? the current CEO, Alan Lewis, is also involved with J&J, he is not? How can this NOT be a conflict of interest?
[/quote]
Bridge to a cure and cure are not the same thing and if people are unable to differentiate then that is their fault. If an artificial pancreas is eventually developed that can eliminate 98% of what a diabetic has to do, I will take that 8 days a week. It might not fit the definition of cure exactly but that is pretty damn close. You make it sound like an artificial pancreas will be the end of all research into diabetes. That just is not the case. This is something that has not even been developed but people are ripping into it for unfounded reasons.
If the JDRF were benefitting financially from this then it would be a conflict of interest and moreso if it were an exclusive deal with Animas, since this is not the case, I do not see a conflict of interest.
[/quote]That wasn't my question, my question(s) as stated above are HOW is the AP a "BRIDGE to a cure'. My reasonings for questioning JDRF are NOT unfounded, not at all. I have a right to question the very agency that claims they are searching for a cure for my daughter and the millions of others with type 1, and so much funding is going to companies that they are connected with. When I give THOUSANDS of dollars to an angency/company, I have a right to ask these question, and I have a right to have those questions answered. Do a little research, you'd be amazed at what you find.
I'd still like my original questions answered.
[quote user="curet1"]
Gary, I thank you for stopping by, but I have a few questions for you.
1, How can the AP be considered a 'bridge to a cure' when the AP is a technology? It really has nothing to do with a cure. Its similar to tell those that use wheelchairs that they are 'cured' or someone that uses a prothsetic hand/arm/leg that they are 'cured'. We need better techology, but by calling the AP 'a bridge to a cure' but a lot of false hope in people.
2, Woody Johnson is the heir to J&J, is he not? He was also the CEO of JDRF at one point, was he not? the current CEO, Alan Lewis, is also involved with J&J, he is not? How can this NOT be a conflict of interest?
[/quote]
I’m glad to answer these questions on behalf of JDRF. I’ll respond to the second set of questions first.
I explained the extent of Woody Johnson’s connection to JDRF in my original post. He is not and never has been the CEO of JDRF. JDRF’s current CEO, Alan Lewis, has no connection to J&J. Prior to coming to JDRF, Dr. Lewis was CEO of Novocell. As I stated, we are fully transparent about the relationships here, and there are no conflicts.
Regarding your first set of questions, I think we can agree that a cure means different things to different people. We can look at the different responses to this thread and see that’s the case. However, we are speaking about an artificial pancreas as a “bridge to a cure” for some specific reasons. First, as many here have pointed out and discussed, it will result in significantly better and healthier lives for people with type 1 diabetes until biological cures are available. Second, it should not only improve people’s lives in the near-term, but increase the success rate of biological cures when they are discovered.
To expand on this point, there is mounting evidence that improving metabolic control (such as reducing the amount of hyperglycemia a person experiences each day and reducing glycemic variability, as an artificial pancreas would accomplish) may provide a much better environment for a cellular approach to have the highest likelihood for success. In the case of regenerated or transplanted beta cells, the artificial pancreas could offer protection and give them a better chance of survival. JDRF is currently looking at clinical trials that combine artificial pancreas technologies and beta cell replacement, and NIH is currently funding trials examining closed-loop control in new onset diabetes.
The JDRF artificial pancreas website features a video with Dr. Richard Insel that explains this point. You can watch it at http://www.artificialpancreasproject.com/videos/ (click on the video entitled “Playing a role in regeneration”).
I hope this response is helpful in explaining JDRF’s reasoning in supporting this specific partnership and our artificial pancreas project in general. You are welcome to contact me directly if there’s anything else you’d like to discuss.
--Gary
"It sounds much like the frustration, fear and lack of awareness have gathered together to guide the emotions for the T1Ds, parents and family who may not yet understand what is happening to get us a cure for this pain in the ass condition."
sjwprod, frustration - yes, fear - no, lack of awareness - yes in the respect that over the last years I was unaware of JDRF's amount of money they were putting into the artificial pancreas project and projects working on curing "complications".
I take responsibility for this at this point. It wouldn't surprise me if there are tons of people who do not comb the JDRF Web site but only sign up to walk thinking they are donating money as it is simply "for a cure".
We're all passionate about where we want our hard-earned money to go, and we have a right to donate where our hope lies without being judged.
Going forward, families who continue to donate should have their questions answered by a JDRF spokesperson. I think it's great this is taking place.
[quote user="curet1"]
[quote user="CHLjoe"]
[quote user="curet1"]
Gary, I thank you for stopping by, but I have a few questions for you.
1, How can the AP be considered a 'bridge to a cure' when the AP is a technology? It really has nothing to do with a cure. Its similar to tell those that use wheelchairs that they are 'cured' or someone that uses a prothsetic hand/arm/leg that they are 'cured'. We need better techology, but by calling the AP 'a bridge to a cure' but a lot of false hope in people.
2, Woody Johnson is the heir to J&J, is he not? He was also the CEO of JDRF at one point, was he not? the current CEO, Alan Lewis, is also involved with J&J, he is not? How can this NOT be a conflict of interest?
[/quote]
Bridge to a cure and cure are not the same thing and if people are unable to differentiate then that is their fault. If an artificial pancreas is eventually developed that can eliminate 98% of what a diabetic has to do, I will take that 8 days a week. It might not fit the definition of cure exactly but that is pretty damn close. You make it sound like an artificial pancreas will be the end of all research into diabetes. That just is not the case. This is something that has not even been developed but people are ripping into it for unfounded reasons.
If the JDRF were benefitting financially from this then it would be a conflict of interest and moreso if it were an exclusive deal with Animas, since this is not the case, I do not see a conflict of interest.
[/quote]
That wasn't my question, my question(s) as stated above are HOW is the AP a "BRIDGE to a cure'. My reasonings for questioning JDRF are NOT unfounded, not at all. I have a right to question the very agency that claims they are searching for a cure for my daughter and the millions of others with type 1, and so much funding is going to companies that they are connected with. When I give THOUSANDS of dollars to an angency/company, I have a right to ask these question, and I have a right to have those questions answered. Do a little research, you'd be amazed at what you find.
I'd still like my original questions answered.
[/quote]
Reading comprehension is not your strong suit I see. I didn't bother answering your question. I touched on you final statement in part one of your post. I guess I'm not saying it right but they are searching for a cure and they are also looking for more ways for us diabetics to better manage our disease as well. Judging by how you grossing overlook this fact leads me to believe that you think if the money does not find a cure it is wasted. Now that I reread my post, I did answer how it is a bridge to a cure, albeit in a simplistic form. I'm afraid I'm not the one that needs to do the research.
I have been reading this post for a few days and keeping my thoughts to myself, here's my 2 cents and I'm not trying to anger anybody.
First: I have looked through the JDRF website and it is NEVER stated that 100% of the funds go to finding a cure. In fact, if you click on the "About JDRF" tab it says that more than 85% went to funding research for a cure and if you click the "Research" tab you'll see some other projects they have funded. So maybe before somebody donates hundreds or thousands of dollars they should pay closer attention to where it's going beforehand instead of complaining because they don't like how their "generous" donation is being spent. Furthermore, while asking for donations for our upcoming walk I have told my family and friends about the resaerch for a cure and other benefits of their donations. I am 100% sure that if I called or wrote every one of them and told them about the AP it wouldn't change their minds the least! I take that back. Being that the AP is, at this time, the more attainable goal we might just get more doations!
Second: I want to see my son cured of this disease. But in the meantime I am thankful to JDRF and the technology to improve his life and health until that day. The AP may not be a cure, but it's the optimal treatment. If I no longer had use of my legs I would rather take the wheelchair than sit on my bed all day. It wouldn't cure me and make my legs work, but I would take it.
There certainly has been a LIVELY discussion going on here about the artificial pancreas project!
As this forum goes on I want to remind everyone here that each person is entitled to have her own opinion, and everyone is entitled to respect. Please keep the dialogue civil and refrain from personal attacks. I won't tolerate it, the community won't tolerate it, and you'll get kicked off if you cross the line.
It's important to remember that we all share PASSION in the battle against T1 diabetes. The fire and concern are evident in some of these posts-- after all our lives and loved ones lives are at stake. However please remember that we're all in this same fight together, and we should not turn on each other. It's good to have a healthy debate, but please be respectful.
On a separate note: we need to also remember that JDRF is not made up of faceless, calculating decision makers who make arbitrary judgments about raised funds. The board, staff and senior volunteers are mostly made up of moms, dads and adults with T1 who are as desperate for a cure as everyone here on juvenation. The discussions that have happened on this thread are similar to some of the discussions that have happened at a national level. There's been as much thoughtful debate and emotional ranting (maybe more) to get to some of these hard, hard decisions. There are world class doctors and scientists and T1 patients and parents and grandparents and sisters and brothers of T1s (like us!)who have to make these hard choices. They give enormous amounts of their time, talent and treasure to the organization to help find a cure. They make these hard choices and they don't make them lightly.
~ Red Maxwell
Of course this is a heated topic! I think mainly because people donate to JDRF for a CURE! After reading all of the responses to this topic over the past few days I have had a chance to calm down and be reflective on this issue. I am a long term veteran of this disease (37 yrs) and I have lived through all the treatment plans that has come with this condition. I think my frustration is not only at JDRF but the medical establishment as a whole. We don't cure things anymore! What was the last major medical condition that was cured? Polio maybe? Diseases and chronic illnesses have become industries. Diabetes has become a multi billion dollar industry. JDRF, I have always viewed as a "maverick" in that they are going up against this industry and trying to put them out of business. So now with JDRF teaming up with this multi billion dollar industry to make a new product just doesn't sit well with me. It is like they are crossing over to the "dark side". Plus I don't think the diabetes industry needs JDRF's help for R & D. The diabetes industry knows how profitable this disease is and will do whatever is necessary to out do their competition. Let them fund their own R & D. They know the market is out there. You can't turn on a TV nowadays without being bombarded by ads for diabetes devices.
When I was first diagnosed with diabetesin 1973 I was told that a cure was about 5- 10 yrs away. The other day I saw this quote by Aaron Kowalski of JDRF talking about the artificial pancreas on Diabetesmine website:
“A cure is still our ultimate goal, and we’re still spending 80% of our research budget on pursuing that. But you have to appreciate that a walkaway cure is not around the corner… We probably overpromised on that in the past. We believed too many overenthusiastic scientists." So 40 years and 1 billion dollars spent on research and JDRF is no where closer to a cure than it was when I was first diagnosed. I guess I have to respect the fact that he was being honest. But being honest probably doesn't bring in many donations.
***After i wrote this I googled Johnson & Johnson CEO salary- In 2008 Bill Weldon CEO of Johnson & Johnson total compensation was 29.4 million. So the 8 million that JDRF is giving them for R & D research is peanuts in the big picture of things. If Johnson and Johnson wants to get into the artificial pancreas business let them pay for it themselves.
Hi everyone,
I have been following this thread since I started it and I can see the frustrations as well as the excitement for the APP. I have Type 1 and the same concerns as most of the people on here. I also see a really good point that was made and yes, I am sick of wearing devices and they are NOT a cure but on the other hand I say to myself hey, if there is something to make my diabetes management easier until there is a cure, oh heck, yea I want it. I don't care where the technology comes from, Animas, omni, Medtronic, or your cousins brother. This is a really hard disease to manage. The easier it allows me to deal with it the better!
Call it a bridge to a cure, a cure whatever the case may be. I don't care as long as it makes my life easier and keeps me healthy. Of course I want a cure, in the worst way. Just like everyone else. I want to do things that I used to be able to do before my diagnosis. I want to be able to have a child without worry. I want my life back to where it used to be. As do most of the people and parents on juvenation.
Give to whoever you feel you want to give your money to. If you don't support the JDRF there are others that you can give to. At the end of the day you have to feel comfortable with your donation, but coming on here attacking others is not the way to do it. If you want answers contact the people directly. That is what I do.
We need to stick together and fund these types of advances in technology as well as funding potential cures. Whereever they come from. In my honest opinion yes, I do think there is a lot of corruption and it close to impossible to change that. It is happening in almost every .org. I don't really care if this person or that person is affiliated with a certain company or not. I want the technology and most of all a cure but, I will take an artificial pancreas that works till then.
But please keep in mind that personal attacks toward another member are not acceptable. If you feel yourself getting heated take a break from reading and come back when you are calm, that always works for me.
Also, note that I know you are venting. I urge everyone in this forum to be RESPECTFUL. This post was not meant to single anyone out, I am just expressing my own feelings as a type 1 toward the APP.
If you have any questions or concerns or need me to contact you with someone from the JDRF feel free to email me at gina@juvenation.org or through my inbox on Juvenation.
~Gina
[quote user="CHLjoe"]
Reading comprehension is not your strong suit I see. I didn't bother answering your question. I touched on you final statement in part one of your post. I guess I'm not saying it right but they are searching for a cure and they are also looking for more ways for us diabetics to better manage our disease as well. Judging by how you grossing overlook this fact leads me to believe that you think if the money does not find a cure it is wasted. Now that I reread my post, I did answer how it is a bridge to a cure, albeit in a simplistic form. I'm afraid I'm not the one that needs to do the research.
[/quote]I don't appreciate you nasty comments. My questions weren't directed at you to begin with. I was asking JDRF the questions, since you felt you could reply to me in a nasty way, I replied back, simply stating that you didn't answer my questions. I'm sorry you can't handle someone asking questions. As someone who have given lots of money, time, and engery to JDRF, I expect answers, and without attitude. Anytime you see JDRF walk, or ride, or any other fundraising, what word do they use? C U R E. Just today I received an email about the Ride to CURE diabetes..
The first sentences in the Email "The JDRF Ride to Cure Diabetes is an adventure of a lifetime. Riders from around the world take on two challenges: raising the critical money needed to fund the research that will cure diabetes"... didn't see anything in there about research for the AP, or giving money to big Pharma companies, did you?
Try to have an adult conversation without being nasty.
Again, I urge you all to be respectful of one another. There is no need for name calling or any other sort of abusive behavior. Lets keep this forum on the right track with a healthy debate. If you don't comply with the terms of service of Juvenation under the Site Use section You shall not upload, email, post or transmit to, or distribute or otherwise publish through the Site any material which: (i) disrupts the normal flow of dialogue and/or exchange on the Site, including posting or otherwise transmitting material that is not related to the subject at issue or otherwise restricts or inhibits any other user from using and enjoying the Site;
You will force me to kick you off for a period of time, or permanently ban you and I don't really want to do that. So, keep it clean everyone.
Thanks,
~Gina
Juvenation Community Manager
"If you want to win a race, first you have to arrive" Fangio used to say. This a very important thing, is a step closer to the cure. They can't jump from the pump just to the cure... this are small steps but important to find the cure.
I'm happy with EVERY thing that makes my life easier, 'cause is one step closer to the cure.
Well said Juan!