Editor’s Note: Allison Blass, my new assistant editor, was moved by what she heard and saw at the JDRF Research Summit last weekend and what she read thereafter. But maybe not in the way you’d think…
I remember when I stopped believing that I would see a cure for diabetes.
It was a spring afternoon when I was in college. I was sitting on the back deck of this coffee shop I frequented. It was a covered deck, you see, and so you could enjoy the somewhat warm weather of an Oregon spring day without risking being in the wrong place at the wrong time when a raincloud passed over campus. I could sit there for hours, drink coffee, chat with my friends, pretend to study. It was on one of these days that I was sitting in an uncomfortable plastic chair, glued to the pages of James Hirsch’s Cheating Destiny. I actually don’t have a copy of the book with me (it’s safely tucked away in storage), but what I do remember is reading about his discussions with researchers and how he learned just how complicated diabetes is, and just how much researchers felt they didn’t understand. Tears began streaming down my face. In those moments, the cure shifted from a tangible dream to a distant hope.
Losing faith in something you’ve believed for so long is traumatic. There is utter shock. Complete disbelief. You argue that it couldn’t possibly be true and you present a laundry list of perfectly logical reasons why this cannot be so. The people delivering this horrid news are people you are supposed to trust, and they have taken something precious away from you. There is some anger at being fooled for so long, and then a resignation, and a hollowness. A void you’re unsure how to fill. What is my motivation?
Earlier this week, I read the diaTribe’s interview with Jeffrey Brewer, the president and CEO of the Juvenile Diabetes Research Foundation, an organization that I have raised several thousand dollars for over the last 17 years. I had also attended a JDRF Research Summit over the weekend, where the most exciting breakthroughs, it seemed, were coming from the artificial pancreas. A tool. Another tool. At first, I merely skimmed Jeffrey’s interview with Kelly Close and Co. I didn’t really give much thought to it.
Then I saw this thread on Tom Karlya’s Facebook wall. Isn’t Facebook where the most interesting debates are happening these days? I knew Tom worked for a competing organization, the Diabetes Research Institute, and so I was curious to see what he had to say, but he said nothing. He merely opened up the conversation. Many parents were angry with this article. Many of them were upset that JDRF was moving away from the “cure” and that they were going to be more focused on adults and technologies for living with diabetes. No more priority on the cure? You might as well have told them that JDRF was disbanding and that all the remaining money was being funneled into scholarships for clown college.
At first, I was confused. I didn’t understand how people could be so upset with JDRF’s decision. Well, that’s not entirely true. I know a lot of people who don’t like the things JDRF does, and sometimes I get it and other times I think they’re making a big deal out of nothing. But these people seemed to have at least some respect for JDRF. So why the sudden change? Mostly it because Mr. Brewer said this:
“The first very big transition is we’re moving away from the over reliance on the cure as the central part of our message and funding.”
Of course, he quickly followed up with: “This does not mean JDRF is any less committed in its focus to find a cure, but we have some work to do in order to get there. And in the meantime, there are many people who will live with diabetes for a relatively long period of time. We have a responsibility and an opportunity to help them live better, healthier, longer, and less stressful lives. And so one of the big changes that we’re undergoing is focusing on improving the lives of people living with diabetes on a day-to-day basis.”
Several parents on forums that I’ve read have said that JDRF’s mission was always for a “cure.” And they’re right. That is always what they said. But you want to know something? Things change! In the decades since JDRF was founded and that mission statement was created, we have 
learned more and more about how diabetes works. One thing we have also discovered is just how much we don’t know. We’ve learned just how damn complicated and unwieldy this disease can be. When information is learned, goals are modified. New strategies and tactics are implemented. The cure has not been erased from ambitions, but there have been additions made. Some people might think that the cure is getting farther and farther out of grasp. The truth is that it has always been far from our reach. The problem was that we had no idea how far. We didn’t even have the map! Now we’re starting to plod along and get our bearings. So yes, the cure is very far away because now we know just how far we have to go.
One father told me that if a cure is found, then all the money spent on new technology will have been completely wasted. He might be right. If I had a crystal ball, I could know for sure which direction to go. But I don’t. None of us knows when a cure is coming. None of us knows what future lies in front of us. No researcher should ever promise a deadline, because they have been wrong time and again. I don’t know if you should exclusively fund raise for JDRF. Or if you should only fund raise for DRI or Faustman or Joslin or whomever. I don’t know who has the answer. Personally, I try to give as much money as I can to as many organizations as I can. If you don’t like the idea of giving your money to an organization that isn’t fully dedicated to finding a cure, that’s fine. Don’t let anyone tell you otherwise. But I will add that not everyone has the same confidence as you. You can count yourself among the lucky.
What I do know is that I want to play with my children someday without having to be the one to stop and get a juice box. What I want is for my fiancé to not worry about whether or not I will wake up in the morning. What I want is for my eyes to stay clear and my heart to beat strong and my legs to carry me to the far reaches of the world. Some may say that technology is “good enough” now, but do you really want to stay exactly as we are today? Are you really satisfied with the accuracy of your glucose meter, of your continuous glucose monitor? Are you really satisfied with the functionality of your insulin pump? Are you really OK with spiking after breakfast? Are you really fine with wondering if your body will wake you up when your BG is too low or if you will sleep through your CGM alarm? Wouldn’t it be nice if there were just a few more improvements to our lives?
I know that all this technology will, at the end of the day, benefit Big Pharma. And I get that they may be seen as “evil” because they make money off of us being sick. But I don’t really see another way around it. I wish I knew why JDRF has to give money to Pharma in order to get them to do things for us patients, but apparently that’s how it works. Maybe someone can leave a comment and explain it. What I do know is that Big Pharma, so far, has saved my life. Yes, they make a profit off it and yes, the whole price thing and insurance thing and healthcare reform thing suck (but that’s another story) and yes, they are a little slow on the uptake when it comes to changes they need to make to their products (I’m looking at you, Minimed). But they are the ones who make what we need to stay alive. Without them, we’re sunk. And no, I don’t believe they are trying to keep a cure from us, because seriously…? A cure is not coming for free. Someone will be making a pretty penny off whatever they come up with.
Listen, I get it. You’re a parent. Your No. 1 concern is to end the suffering of your child. If I were a mother of a child with diabetes, I would probably feel the exact same way. It is heartbreaking to watch a child having to prick their finger or wear an insulin pump that’s as big as their head. Nevertheless, not all of us have the same faith as you. Some of us just can’t believe that a cure is around the corner. We try. Trust me, we try. There are moments of anger and frustration and I just want to scream and throw my glucose meter against the wall so hard that it shatters. Sometimes I dream about the day that I won’t have diabetes anymore, when the only reason I go onto Twitter is to talk about the latest Hollywood blockbuster or find out what’s happening in the world. I dream about not rolling over onto my insulin pump when I’m doing crunches at the gym. I pray that my children will never, ever have to save me.
But I just don’t think that day will come in my lifetime. And to the people who agree with me, the people who say, “I don’t know if I believe anymore either,” then at least we know someone understands. I want a cure so badly it hurts, but I also know that I may never see it. The weight of diabetes, the weight of doing this on my own, everyday, forever, is almost more than I can bear sometimes. I don’t want to do this anymore. I need help. I don’t know what that help will look like. But if that’s in the automation of an artificial pancreas or a pill that I take everyday to jumpstart my beta cells or something else entirely, then I fully support it.
I want a cure and a better life today. The two do not have to be mutually exclusive.
Being a type 1 diabetic for 37 years, I appreciate this post and share many of the same feelings. It really hit home with me.
I live every day fighting this disease, and I will not give up. I do everything under my control so I can live a “normal” life with or without the cure.
I am positive that there will be a cure to this disease. It will just take some amount of time and money to find the cure. It will happen. I only hope I will be around for that day. At least I know I contributed to finding the cure.
Diabetes may eventually beat me, but until that day comes, I will continue my fight. I dream of that Diabetes is cured party. I want to enjoy that party. With or without the cure, I want to make sure that I contributed positively to the world we live in. That’s what really drives me.
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Thank you for your eloquent post, Allison. I was diagnosed with Type 1 autoimmune diabetes in 1995, at the age of 35. I signed up for the lifetime MedicAlert coverage (no longer available) because a quick calculation by this scientist (me) knew that I would need the lifetime option. I say that I am just hangin’ out, keeping good control as best I can with the current technology, while waiting for better technology (not a cure, which I don’t think will happen in my lifetime). So I very much appreciate Jeffrey Brewer’s pragmatic and visionary approach. Oh, and the vast majority of people with Type 1 diabetes are adults, and the majority of new-onset Type 1 is seen in adults (according to the CDC), so of course some emphasis should be put on adults.
I’m not a diabetic – my little boy is (Type 1, diagnosed 18 months ago at age 5). I want a cure for my child.
Of course I want to use the best possible management technology, techniques and medication, but each and every time I give him a finger prick or change an infusion set or download info from the pump I hear the pharmaceutical industry going cha-ching. They have a vested interest in improving diabetes management, but a powerful disincentive to a cure.
While it is obvious that the pharmaceutical industry must remain a research partner for short term benefits, the partnership with Big Pharma will always have a Mephistophelean dimension.
JDRF shoudl seek to build partnerships and alliances with the Healthcare Insurance industry as well – Big Insurance has HUGE incentives to want to back a cure.
The drug and biomedical engineering companies have plenty of funds and plenty of competition to give them reasons to woo diabetics to them. But Insurers have a great deal of unexplored potential as allies in seeking a cure, because a cure will have a direct positive effect on their bottom line.
Even the AP will probably not be on the market in five years, so how could a cure be ready in ten or even fifteen years. Very disheartened to read that Smart Insulin is so far off from coming to market. Any new therapy is years away from release and many therapies I held great hope for (LCT) are not proving to be as successful as previously anticipated. As simple as “getting sugar into a cell”? …. unfortunately, not simple at all but the immune system is incredibly complex. We are all working toward the same long term goal….. a cure. But we must add new short term goals so our kids and all adults with Type 1, will be alive and in good health when the cure is found, as well as make life manageable on a day-to-day basis while waiting. I do not consider diabetes management as it exists today, acceptable. People with diabetes, parents with children with diabetes can raise money and contribute that money toward the organization who shares their goals. JDRF, DRI, Faustman all come to mind. I would like to see more options than the above three on some sort of website so you could contribute towards the research that excites you personally.
David J Webb is an idiot, claiming (like so many others) that T1 can be cured by magical foods. David, please explain: How, exactly, does cinnamon work as “an alternate to insulin” at the cellular level?
He goes on to say, “I am no engineer or scientist, but even I can see how to put together a device that would test without pricking the skin.”
OH, REALLY?
- – - – -
Whether he intends to sell “natural cures” at high prices, or invite us all to become “venture capitalists” in his bG monitor device company, I don’t know. But the post smells like a set up for some kind of money grab.
[...] reading some really great posts today by Allison, Lee Ann, and especially by Kelly (among others), I decided that I wanted to post my takes on new [...]
[...] reading some really great posts today by Allison, Lee Ann, and especially by Kelly (among others), I decided that I wanted to post my takes on new [...]
[...] CEO Jeffrey Brewer spoke about the need be realistic about when we’ll find a cure (it’s likely not just around the corner) but also how focusing on improving daily management along with detection and prevention will all [...]
I am doing a research project on diabetes for my Rhetoric class at the University of Illinois. I am a type 1 diabetic and have been for 16 years. I don’t have much to say other than I too welled up when reading this blog post. This paragraph, however:
What I do know is that I want to play with my children someday without having to be the one to stop and get a juice box. What I want is for my fiancé to not worry about whether or not I will wake up in the morning. What I want is for my eyes to stay clear and my heart to beat strong and my legs to carry me to the far reaches of the world. Some may say that technology is “good enough” now, but do you really want to stay exactly as we are today? Are you really satisfied with the accuracy of your glucose meter, of your continuous glucose monitor? Are you really satisfied with the functionality of your insulin pump? Are you really OK with spiking after breakfast? Are you really fine with wondering if your body will wake you up when your BG is too low or if you will sleep through your CGM alarm? Wouldn’t it be nice if there were just a few more improvements to our lives?
Nearly did it in for me. Stay strong and do not give up hope.
What I do know is that I want to play with my children someday without having to be the one to stop and get a juice box. What I want is for my fiancé to not worry about whether or not I will wake up in the morning. What I want is for my eyes to stay clear and my heart to beat strong and my legs to carry me to the far reaches of the world. Some may say that technology is “good enough” now, but do you really want to stay exactly as we are today? Are you really satisfied with the accuracy of your glucose meter, of your continuous glucose monitor? Are you really satisfied with the functionality of your insulin pump? Are you really OK with spiking after breakfast? Are you really fine with wondering if your body will wake you up when your BG is too low or if you will sleep through your CGM alarm? Wouldn’t it be nice if there were just a few more improvements to our lives?
Nearly made me cry
You make alot of sense Kevin.
and I agree with you .Ditto Buddy..
Such as our so called Fast Acting Insulins? They take 2-3 hrs to take full effect.. That’s real fast isn;t it? Yeah , right..
And if PUmps are better than these So called “Long Lasting Insulins”? Then how come ALL T1′s can’t get them ? Or how come They haven’t made a Transdemral Insulin Patch to deliver Novalog over a 24 hr Period, like they have other Medications?
Or These Test Meters.. They can be at least 10% different than Plasma or the Real Reading of our BG’s NO big deal right.. but add another 10-20% they are allowed to be off by the FDA? Now your 20-30% off.. right?
and they now have a Non Invesive Unit that test for one’s A1c’s , so why not a BG test meter? Ans? Money.. Profits..and it’s not using just the Few ( 2 million) T1′s , it’s the 20 Million T2′s they’re after.. get them 3x day and they make Billions!
And It’s the Old Prevention or Treat the Problem.. which creates The Most $..
We are in a $ driven Society and Only Capitalisum prevails..
But If and when we have a National Health Care Plan for the Masses?
We will have to find Cures and better solutions, or become like other countries and Limit Care.. dramatically..
On one hand? I’m blessed I had 45 yrs before I got My T1, but On the Other hand? I know what I’m Missing!
Do not be fooled. It is in no one’s interest but your own and your family’s for you to be cured.
Way back in the 90s there were beta cell transplants, there were clear signs that is the way to go and cure was at an arm’s length. Yet all of the companies that conducted those experiments have long disappeared or changed their orientation. We have literally seen NO advancements made in the last few decades, we have only became more hooked on technology and disposable products. Strips, needles, disposable pods, tubes, every product today is designed to increase your lifetime expectancy so you will pay for that stuff longer! Now some of you may say. “Ok, but we have a higher level of control now, it is easier and more manageable, we need that!” Do we really? Then how are people that got diabetes in 40s, 50s still alive? They used to squeeze insulin out from pigs, they had to dose it by feel, they couldn’t check their levels every few hours like today. And they are still alive. The human body is designed to stay healthy, even in the worst conditions possible.
Use your head. Look at the world we live in today, look at how far the technology has gotten us. Do you really think it is that hard to plant a few cells on a perfectly healthy organ? Harder than gene manipulation? DNA recombining? The stuff that goes happening about every single day?
You are a lifetime costumer, and they are not going to let you get away just like that. The cure has been found a long time ago, it just wasn’t commercial enough. A former addict is of no use to a dealer. Never was. Never will be.
It would be nice if we could just get the truth as to where the research really stands? Is islet supply the only issue to moving islet tranplantation into a new treatment status? I refrain from saying a cure knowing that we may need to receive a fill-up of cells every 1 or X # of years. To me, that is a pseudo cure worth taking. But, the JDRF, DRI and others keep saying supply, supply, supply is the issue and we are years away from solving this issue. Why? Why so long? Yet, we keep reading report after report about “Breakthroughs” in turning stem cells, gut cells, and etc., into insulin producing cells.. So, which is it? If we could start using pig insulin 80 years ago, and pig valves in heart valve transplants today then why not use pig islet cells in islet transplants today? Right now? Supply problem solved!
I won’t even go into what I think about the JDRF and specifically Brewer! Other than to say, if you check the JDRF website, MEDTRONIC donates $250,000.00 per year to the JDRF so no wonder why they are pimping ‘technology’ versus a cure! Not to mention, when the JDRF was founded it was founded and run by parents of T1 and now its run by scientists protecting their industry. BTW – MEDTRONIC also bailed on the implantable pump which delivered insulin CORRECTLY in favor of much bigger profits in the external pump with proprietary accessories..
We are being lied to year after year and its amazing how MERCK can buy the rights to SmartInsulin and yet they seem to be siting on it.
The person that posted that we hear about breakthroughs and then the companies disappear or focus their efforts someplace else, I totally agree! Geron Corp., to name just one….
We are forced addicts, additicted to a legalized $ billion dollar industry. This is no different then the recent media pop regarding antibiotics and the lack of interest in new ones by big pharma… Why create one off drugs when you can create a lifelong pipeline of consistent and ever increasing cash flow.
Everyday I recevie anywhere from 10 – 20 google alerts regarding type 1 diabetes research “breakthroughs” and while some are duplicates, most aren’t and all of them end with the same tag line…. “This may ONE day be used to change the way Type 1 is treated”. So, what this really means is that those same researchers are letting us know they are playing with mice and in order to keep playing with their mice they need additional funding. How about you move on to peolple and put your “Breakthrough” to the final test. If it works you are a hero, if not you can take your bat and ball and go home. To me, that is the crux of this entire cure issue. No one is willing to put their treatments to the ultimate test and risk failing!!!!!!!!!!!!!!!!!!!!!!!