Comments to-There Will Be a Diabetes Cure

Tom Karlya-Vice President Diabetes Research Institute Foundation, Inc.

| Sep 13, 2011

I want to thank you all for the many comments that you have posted.   As I said in the article, it does bother me that so many promises have been made and not kept regarding a cure. This has resulted in people just giving up hope and coming to believe that there will never be a cure for diabetes.   Such promises are still being made today.

I would caution anyone who hears that a product or "potential" cure will be here in five years. If there is no data to back the claim, you simply should not believe it.  Ask questions, lots of questions, of whatever research center you support or believe in, and make sure you get answers!  Do not take anything merely at someone's word.  Research is not something that should be revealed only in press releases.  It is something that should be presented, evaluated, questioned, and, hopefully, proven.  

Diabetes has been cured in mice over three hundred times (maybe even more).  Both my children with type 1, however, are not mice.  Although  research on the rodent model is important, you need to be cautious when reading about mouse findings as  a potential cure for diabetes. Also be cautious of the "press release-related cure syndrome."  If you read about  a significant find that can be moved up the ladder of research, that's fabulous.  But if it is not in human clinical trials, it's a lot further away than you might think.  And be careful about  the "human clinical trial" aspect as well.  Testing on humans in a very small study to make sure that the treatment won't kill the subjects is done to satisfy FDA requirements regarding safety.  While it may technically be a trial on humans, it is not a full blown clinical trial proving that a treatment will work on the population as a whole.  Again, ask questions, lots of questions.

I also stated in my article, and I was very firm on this, that managing diabetes and having the tools to do so is as crucial as a cure.  If people with diabetes do not take care of themselves, a cure very well may be a moot point.  In response to the  comments about managing diabetes, I want to emphasize that I am in absolute agreement about its importance.  
But just as people overstate the significance of their lab findings, so too do some companies selling "potential" devices.   Here's an example:  the "Dream Beam," a "potentially" incredible product that turned out to be nothing more than a scam (http://www.sec.gov/litigation/litreleases/lr15061.txt).  

It is these types of false alarms that dash the hopes and dreams of so many.  My point is not that you should despair, but rather that you should accept nothing at face value.  Do your homework.  Who is sharing information with whom?  Who is collaborating with whom? Ask, and demand an answer.

With regard to others doing research on diabetes in relation to the DRI, my response is this:  Ask them if they ever discussed working with the DRI in a collaborative effort to move their science forward.   If there is a cure to be had from any promising discovery, why hold those findings so close to the vest? There are millions of us out here waiting for a cure. The DRI will help test any potentially promising discovery and move it along. If someone is doing work and does not want to share what he or she knows, then I ask, why the heck would you ever support that researcher?  

The DRI is known around the world for this collaborative spirit, and the proof is in the Diabetes Research Institute Federation. It was started by Dr. Ricordi many years ago by collaborating with other leading diabetes researchers.  While this is the largest worldwide effort focused on a diabetes cure, it is only part of a string of collaborations that have defined the DRI since its inception.

There are a number of projects underway at partner centers around the world. Why? Because 1) The best minds working in their areas of expertise will deliver greater results more quickly; 2) Sometimes it is more cost-effective to conduct research outside the US; and 3) There are fewer barriers to innovation and progress without certain regulatory agencies and lobbies.  
Just ask the question of the researchers you know, and let me know what they say to you.  This is not a rhetorical statement: Go find out, and then email me at tkarlya@drif.org, I want to know what you are told. If we can discuss a truly collaborative effort, the DRI will take that call. The DRI's goal is to go out of business because a cure has been found, and we will utilize everything we have to move the process forward.  Period.  The DRI stands ready to discuss any science-worthy collaboration, as it has all along.

I do so appreciate the comments made and respect the opinions stated.  If you are happy supporting the program(s) you are supporting, I applaud your effort to "not do nothing," as I have stated many times in my writing and lectures.  If you want to know more or want to get involved, my email is above.  None of us can stand idly by and watch from the sidelines.  The work must continue.  
Everyone needs to play a role, if not with the DRI, then wherever you feel the need. But please, engage yourself.  Advancement in anything cannot happen without an army to push the effort.  Get involved.  Together, together, we can find a cure.  I'm more confident today than at any time during the 21 years I have been in this war.   I'm a diabetes dad.

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Categories: Diabetes, Diabetes, Diabetes Research Institute (DRI), FDA, Find a Cure, Research, Type 1 Issues


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Comments

Posted by Katharine on 13 September 2011

I agree with you. As far as the internet went there was a cure right round the corner for my son's type one diabetes and that was 8 and a half years ago. The truth is that unless you are a mouse with very good health insurance there is no cure. Better knuckle down to the best control you can achieve. For my family that means a low carb diet, frequent monitoring, and intelligent decisions about insulins and techniques.

Posted by Anonymous on 13 September 2011

While reading your article, it was clear that you live in the 'world of diabetes' because your words are so meaningful. You have the "we-have-to-get-on-with-it-because-we-have-no-choice" attitude, combined with a firm grasp on what is real and what is a fairytale. And of course... you are a diabetes dad. I am a diabetes Mum and I enjoyed reading what you wrote.

Posted by shosty on 13 September 2011

I wish more would happen to make the implantable insulin pump available in this country. This pump, which I have read is available in France, injects insulin directly into the abdomen, rather than under the skin, and the difference in control and in well-being is apparently amazing. Medical device companies are not pursuing this and JDRF is not advocating for it either.

I have no faith whatsoever in the "closed loop" or "artifical pancreas" projects. Human agency will always be needed for safety. And the monitors, so far, have a lot of problems. Why is this the main thing being pursued?

Posted by Anonymous on 13 September 2011

f you have played the diabetes game for long enough it does start to sound the same. I have a Google alert for "Diabetes Cure" and I get 1-3 a week. Well written & thank you for confirming what we generally think.

Posted by mommasan on 14 September 2011

Mr. Karlya: I SO agree with everything you have said. I am the mother of 2 sons with diabetes, diagnosed at 8 and 9 years old. They are 23 and 21 now. Way back then, I researched and read everything I could get my hands on, and always came up to a brick wall....there really was nowhere else to go. The promised progress is just not being made. Yes, supplies and insulins evolve, but nowhere is a cure evolving. I think I've done a good job teaching my diabetic children to be good diabetic adults, as they take care of themselves very well independently, and it's a good thing because there is no light at the end of the tunnel to convince us that they can stop the constant day-to-day diabetes maintenance - ever!

Thank you so much for voicing a true, from the heart perspective, even if it isn't the Pollyanna optimistic viewpoint "give to us to find a cure!". It's reality.

Mommasan in upstate NY

Posted by Anonymous on 14 September 2011

For the posting about the implantable pump; the JDRF is pushing the artificial pancreas because they have a huge investment in it, it will be their poster child for transformative research, and its simply easier. But, in fairness to the JDRF, there are problems with the implantable pump and it's insulin technologies.

I think the money spent on hardware, like the artificial pancreas, should be put into Smart Insulins, which I believe really are the next generation or iteration of insulin and diabetes management. To have an insuilin shot taken once per day and respond correclty to glucose levels would be an incredible benefit for diabetes management which must receive more emphasis. At this point, a cure is a nice to have but realistically it's decades away, a really revolutionary change in how the disease is managed would be more beneficial than simply being hopeful for a cure. The technology and science just aren't there yet and we need to deal with today (disease managment) while still chasing tomorrow (cure).

I too receive google alerts and I get at least 1 to 3 per day about a cure or taking a "walk" for the cure. One I have received a lot about lately is regarding the research coming out of Israel regarding Dr. Yuval Dor's claims for a potential "cure".

We must move away from increased daily insulin injections, multiple finger sticks, and etc because that is only adding to the difficulty of managemeing this illness so I wouldn't call any of those protocols a good thing or an "advancement" in diabetes care.

Posted by Anonymous on 14 September 2011

Great commments but why doesn't the DRI contact Dr. Faustman directly and offer money and help directly instead of aking us to do it?

DRI's MD's and Faustman's MD's need to communicate directly with each other instead of asking lay people who don't have any clue or authority to call with resources like the DRI has. Please tell us if DRI has contacted Faustman previously and DRI was turned away.

Posted by Kathy on 15 September 2011

In most groups, I am the one with the rose colored glasses. And I guess I am here too. I do believe that the cure is within our reach. There are research facilities all over the world working toward a cure and they are making strides. My islet cell transplant is a giant step away from diabetes and a small step from the cure. The last steps are definable. They are the elimination of immunosuppression and the availability of islet cells. Various methods of encapsulation, pig islet cells, and stem cell research can and will fill in this last gap.

Posted by Anonymous on 15 September 2011

I am a "diabetes mom". My son was 3 when he was diagnosed, he is now 54 years old (and in very good health, thank God). We have seen enormous changes in the treatment of diabetes, but it remains a very demanding condition, maybe even more than what it used to be. Maintaining the blood glucose at the desired level ia almost a full time occupation. Fifty years ago we were told that a cure was forthcoming, that it was just a matter of years ... I agree with those who ask instead for more efficient treatment, better insulins, better (and more affordable) instruments of control, so that the diabetic person can have moments in his/her life when they can "forget" their condition without having to pay the consequences.

Posted by Anonymous on 15 September 2011

Kathy, your comment about a cure being within reach is irresponsible. You have no way of defining what the actual, pinned down time frame is for a "cure" to make it to the bedside for all diabetics.

While there is a lot happening, it only means something if its already moving through clinical trials, not simply a trial to see if it kills the participant. That said, with the pace the FDA moves, we are decades away!

And, most all of the treatments you describe involve toxic immunosuppressive drugs or even xenotransplantation which the FDA most likely won't approve for a large scale population? Too risky since the disease in most everyone elses eyes is "controllable"

If it was just about the money, AIDS and Cancer would have already been cured since those illnesses have received exhorbitant amounts of funding.

Posted by Anonymous on 16 September 2011

Ditto the response from Anonymous Sept 14 who asked if the DRI has contacted Dr.Faustman's lab yet.
EXACTLY what my response was going to be. And to others who have a Google slert set, try "Dr.Faustman diabetes cure" instead.

If I didn't educate myself on diabetes research and hold onto a glimmer of hope, I'd probably be dead by now. After 30 years of Type 1, I have to be optimistic (foolishly?) or my remaining years would seem even more depressing and hopeless.

Let's organize a movement to get researchers collaborating more, versus competing or just not knowing what others are doing. Going to google the researcher mentioned in Israel right now.

Posted by JDCA2025 on 16 September 2011

I agree that research and providing the most accurate information to people in the diabetes community is vitally important. Indeed, there have been many promises/potential cures that have really gotten us nowhere. The organization I am involved in - the Juvenile Diabetes Cure Alliance conducts precisely this kind of research and publishes reports on the work of the different diabetes charity organizations out there. We want to help donors make the best decisions and find the most promising avenues towards a cure. Despite all the setbacks, we shouldn't lose hope that one is possible. Progress is being made, but we need a more focused approach to really take advantage of it and get on the right path towards a cure. An informed and united diabetes community is where we have to start.

Posted by Anonymous on 17 September 2011

While I agree that researchers should share and collaborate, the bottom line is they are still beholding to turning a profit for someone or some institution. It's sad but true. What I find so disgusting is that we (society) spend more dollars on finding more efficient ways of destroying life then we do saving it. $34 billion for 1 jet fighter and yet we struggle for funding for autoimmune diseases.

Posted by JDCA2025 on 19 September 2011

That is also a very good point. There is a lot of money out there, but a lot of it is not being spent the right way. Finding a cure for a disease, especially one like diabetes, is complicated and difficult, but not impossible. Progress and eventual results are possible. But we need change, we need to redirect the resources towards the people working hard in the research labs. Hard as it may seem, we should not give up - we should continue pressuring and asking for answers.

Posted by Anonymous on 21 September 2011

We should never give up but there needs to be a balanced three prong approach; (1) cure, (2) treatment, and (3) complications. You will notice that 'prevention' is missing because that will happen at the same time a cure does, I don't believe it will happen separately. I am familiar with the JDCA and I applaud your commitment and approach.

Posted by Anonymous on 22 September 2011

So, it would appear that the FDA or as I like to call it the Federal Death Administration has once again increased the hurdles for access to type 1 diabetes technologies that are in place in over 40 countries, just not the USA, and may improve managing this disease. Specifically, the low glucose suspend (LGS) insulin pumps. Way to go FDA! More proof there won't be an 'approved' cure using anything requiring immunosuppressive drugs or xenotransplantation. You will need to go to Europe to get it so I hope its a one time treatment.

Posted by Anonymous on 22 September 2011

Go to www.lctglobal.com for xenotransplant (pig cells) info on clinical trials already done in New Zealand and Russia. LCT got financial help from JDRF. I echo question, why isn't DRI helping Dr. Faustman at Harvard? And why was JDRF so slow in giving her financial help? Do patients run JDRF? Do doctors run JDRF? Or has it been taken over by businesses that make pumps and meters?

Posted by Anonymous on 23 September 2011

The JDRF has a cingular focus on the "artificial pancreas" and "stem cells", with the "AP" being their only real "Transformative Research" item in the pipeline. Everything else is just academia fodder.

There is an article on Dr. Faustman's website about the efforts put forth by the JDRF (or JDRF associated researchers) to discredit her research. If any of it is true, what a shame! Although, I am very suspicious as to why it is taking Dr. Faustman so incredibly long to raise money move her research forward if it's that promising?

As far as who is running the JDRF, well it isn't parents of diabetics like it used to be. Yes, Brewer and others have diabetic children but its not the same. It's become a Non-for-Profit ball of red tape comprised of academia and big pharma business arrangements which I believe will hinder, not move forward like they claim, any progress.

Posted by Anonymous on 27 September 2011

So what does the Diabetic Dad have to say about the DRI not supporting Dr. Faustman??

Posted by Anonymous on 29 September 2011

Dr Faustman's research is completely public funded. She has been approached by pharma companies to invest in her work, but she has declined their offers in order to keep her work public funded. If the pharma companies get their dirty hands on her work, the likelihood of the cure actually coming out to the public is extremely slim. Type 1 diabetes is a cash cow and I seriously doubt they'd allow us to get off the hook.

She is currently in the works of Phase II trials where the placebos and small dosages of the drug are used in anonymous and volunteered patients. It's scheduled to start in 2012, I'm told. I've donated my blood to her three times in the past four years. The wait list to donate blood to her is 8-9 months long because people fly in from across the world to see her.

After talking to her on the telephone for half an hour, I completely believe in her.

This year is the last that I'm raising funds for JDRF. I haven't seen the results that I've wanted to see in the ten years that I've been raising significant funds for them. Next year, I'm going to be raising funds for Dr Faustman's research.


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