...or is the overwhelming availability of information on the 'net just leading us to think so?
When I first joined Tu, I asked a question about a cure, and the overwhelming sentiment was that they've been saying "just five more years..." every five years since the Truman administration. [for those outside of the United States: 1945 to 1953]. Everyone seemed to grow in disbelief of these false promises, and gave up hope it would ever happen.
Nowadays, everywhere I turn I seem to be more in tune to various methods being undertaken by researchers to cure T1D: islet encapsulation, beta regeneration, DiaPep, BCG, T-Cells, Skin Cells, Stem Cells. The techniques and approaches are much more diverse than I ever could have imagined.
My Facebook page news feed keeps growing to include entries from JDRF, JDCA, DRI, and so forth, constantly feeding me with little nuggets of hope.
It has been getting my hopes up.
But should it be? Other than the explosion of online social media, what's changed? Diabetes is still not among the high-profile causes that trigger massive outpourings of donations. The political climate still isn't one that emphasizes T1 as a big deal, and the FDA is as overly cautious as they've ever been. Big Pharma is still making Big Bucks off of our care, and many still think they are the Big Roadblock.
So, are we really closer than we were ten, fifteen years ago, or is the ease of distributing information to the masses via social media just making me think that we are? Are even the most pessimistic of pessimists starting to believe that there might be good news someday?
I think that relating funding money to "the cure" is dubious at best.
The high profile high funding high attention diseases you mention, like AIDS and various cancers, haven't been cured but have in at least some cases been turned into chronic diseases, not too much different than T1, thanks to early detection and intervention. Maybe instead of resenting the funding those diseases received I should've been looking for the commonalities.
Personally I think any funding money should go towards T1 treatment. When I was a kid, CGM's and pumps integrated each other, aka "artificial pancreas", were science fiction stuff not expected to come along for 300 years well after interstellar exploration and vacations on mars. But here we are in 2012 and getting this technology is just a matter of insurance coverage.
Tim, I didn't mean to imply that funding is the big obstacle. I am not a believer that "money can solve anything"; far from it. I'm just trying to relate to my perception of what is still the same between now and 15 years ago, and since I'm not overly scientific in this regard, that's what I came up with. (Well, that and an overprotective FDA which tends to suppress, rather than encourage, innovative medical techniques).
But since you brought it up, as far as where money should be going, that's a discussion that the JDCA folks often have. And if Medtronic were to announce that they were going to stop researching and developing improvements to their Minimed insulin pumps and CGM, I'd be pretty ticked off. But when I think that I'll be 59 years old when my (now 3-month old) son receives his college diploma, the prospect of a cure is the only thing that really gives me the confidence that I'll be there to see (literally!) that happen.
I believe that the cure is not a question of money. To me it is a question of scientific advancements in immunology. It needs some medical Einsteins decorated with Nobel Prizes to connect the dots - not money. We are at the core of the immune system here. The day when mankind is able to cure T1 at its core will be the day when many serious problems can be dealt with. With serious I mean that I expect that many problems of transplantology will then be solved. It will be a much different world with people living way beyond 100 years. Without doubt this will come but not tomorrow and not in the time frame of 10 or 20 years. If the cure comes tomorrow I will be happy but it is not part of my plans for the future. 10 years ago I finally decided to let that go. It is not important anymore and I better grab life in the here and now.
In my 33years t1 I have like us all always been hopeful that a cure would come, although knowing that islet transplanting has always failed without the use of immunosuppressant drugs my expectation was always as a fix ie artificial pancres or pump or implanted islets that are somehow made blind to the now understood killer t cells.
Now (I think) we understand that insulin producing cells can regenerate I believe that we have enough information and knowledge to aim research at either killing off the killer cells see: { http://bcgclinicaltrials.com/diabetes.aspx }
This whole new approach seems the most promising that I have seen. If I were a betting man I would say two years max to find a cure and five years max to have it available to the public!
The jigsaw is nearly complete. :-)
Even if that approach reaches a dead end then smart insulin will still be the next best thing to a cure.
I think that it's better to be pessimistic and be pleasantly surprised if one turns up than optimistic and disappointed. I don't like the "push" in various hunks of the DOC to go "all in" on funding ONLY cure related projects as I think there's a huge opportunity to improve the quality of life of many people with diabetes by improving our approaches to communicating between providers and patients to use existing technology. We just need a diabetes tsar, someone with expertise and a furry hat...
I'd say in about three years we will see whether some of these so called potential treatments have a chance at reality. It's really mind boggling how so many research companies have been plugging away for years and years and just not giving up. Many of the companies I have been following for nearly a decade are still alive and kicking. I think most research groups are much more realistic in their time frames then years ago. To get something commercialized is always gonna be about ten years from phase 1. That doesn't mean some people won't be getting relief before approval but with the FDA it's likely gonna be later then sooner. Right now I have my eye on Viacyte. They are in a position to mass produce an unlimited amount of beta cells with Stem cells and working with an implantable device protected against the immune attack. They are anticipating a 2013 start of human trials. If we were extremely lucky periodic shots of BCG would be the ideal solution and even though I praise DR Faustman I just have doubts whether BCG by itself would be able to keep diabetes at bay. I think transplantation is more realistic but certainly not as appealing nor really getting to the core of the problem. I had hopes for Smart Insulin but it looks like it will be shelved for some time anyway. Merck doesn't even show it in their drug pipeline. Smartcells made out great financially but they should have only sold to a company that would have made the drug top priority. Merck has hundreds of compounds in their pipline and none are a priority over any others.
Scott I'm hoping that we are closer to a cure than we were 38 years ago. I honestly don't know how to answer u. Yes I was told the 5 year cure thing back in 73. I can say that we've seen many major changes since then. Let's hope so. Who knows???
Sugarboy, I think you've summarized the advancements quite nicely. Still, I'm not convinced that the regulatory and financial environments (in the US) are in-line to turn this knowledge into a real, and widely available-to-the-public, treatment.
Gary, I wish I could agree that many "many research companies have been plugging away for years and years and just not giving up". I think this may hold true for researchers affiliated with medical universities, but not with private profit-driven companies. Look at Diapep-277. That approach has been passed around more often than a Christmas fruitcake (ok, bad analogy).
Of course, in this age of increased internet/social media/ease of "getting the word out", I feel that a regular guy like me could claim to develop something in my basement, host a web page and write a few Tweets about it, and get national recognition. That could be good or bad. Good, because it gives attention (and possibly funding) to those whose specialties are in medicine, not marketing; but bad because it may give us a false sense of hope and progress. That's is the whole point of the discussion I've started.
Just a few examples, Living cell technologies, Exsulin, Viacyte, Sernova corp, Dr Faustman....I would guess many have gotten grants to help them stay afloat but many of these companies have had private investors. Hell I even invested a few grand in Microislet back in 2007. Their pig transplant looked promising and I thought for sure I'd make some money. By sometime in 2009 I think they went belly up and unfortunately I lost my entire investment.
I have another sad theory…I think they want to keep milking money from us and therefore even if a cure is found, they will hide or disguise it. Look at cancer research…they get the most money, but the same or more people are dying now. And look at all the drug treatments…they are raking in the dough. They don’t want to cure us, they want to suck every last cent out of us. I don’t mean to be negative, I just don’t trust the establishment much anymore.
Hi scott. did they get to the moon??? Do you believe in big money and jobs galore??? In todays world almost anything a human being can imagine can be done giving they have the budget to do so. Yes I beleive they do have a cure but think of the massive amounts of monies lost and the jobs. they could not have possibly landed on the moon and have known that fact now for years
I remember during the height of the AIDS epidemic in San Francisco in the 80s a nurse friend of mine said something similar Holger, about how core science was being approached in looking for the cure, and how it would help medical science immensely. At that time that was maybe a teeny compensation for all the friends we were using way too young. I don't know that any of that happened but I don't know much about medical science. At least AIDS was transformed to a chronic not fatal condition.
I heard something interesting on NPR yesterday that I probably can't repeat correctly. It was about the rate of progress of new technology (and, by implication, all knowledge). It said that for computers it was believed back in the 50s that information was doubling about every 18 months. Then it said imagine a chessboard where you put a grain of rice on the first square, then put double that (2) on the second square, double that on the third square, etc. It said by the time you filled all 64 squares, you would have a pile the height of Mount Everest. That's how progress seems to be going so fast. (I thought it was just me getting older!). Maybe that factor will help Diabetes research too.
Good question Scott. The problem is, as we often point out at the JDCA, not with a lack of funds or a lack of talented scientists and researchers. The problem is that a cure is still not the focal point for diabetes non-profits, and they use the money they receive in fundraisers for a variety of other purposes that may advance the diabetes cause to some extent, but lack a focused and driven goal to really achieve progress.
One thing most of us can agree on as that we need to see changes - otherwise, you are right, we will keep on saying "five more years" forever. If we want a cure, we need to press for one by speaking out.
