A call for YOUR pressing questions!
This coming Saturday, Oct. 25, is the Diabetes Research Institute’s annual conference in New York. One of the main topics is making sense of news coverage on diabetes — are the headlines all just a bunch of hype, or do they bring us real hope?
The DRI has asked me to publish a call for your questions here: if you were in a room with a panel of diabetes researchers, members of the media, psychologists, and other diabetes experts, what would want to ask them in regards to the things you read in the press about diabetes?
I’m excited to report that I will actually be traveling to New York to attend, and to moderate a lunchtime panel titled “Hype… or Hope?“ We’re planning for a lively discussion on how the media today cover so much about diabetes and research, and how can/should patients and their families distinguish the facts from the “non-facts.” There’s also the psychological aspect: does the news just depress you? So should you tune out? Why are they always making great progress with mice, but not with people? And of course there’s the issue that so many research studies reported on may be inherently biased by their pharmaceutical sponsors. Many things to think about.
Have a look at the headlines here. What year do you think these came out? (see below)
Yup, circa 1974. Could’ve been last week, no? How does one NOT get frustrated?
On the DRI discussion panel, and ready to answer your questions, will be:
* Dr. Jay Skyler – DRI Director of Academic Programs
* Wendy Satin Rapaport- Adjunct Professor of Medicine and Psychology at the DRI
* Fran Carpentier – former Senior Editor of PARADE Magazine (who just launched her own diabetes blog to boot)
* Norma Kenyon – Co-Director of the Executive Research Council at the DRI
* Jeff Hitchcock – founder and director of ChildrenwithDiabetes.com
btw, if you’re able to make it to New York City next Saturday, there’s still a little time to register for the conference. Make yourself known. Make yourself heard 
Yeah thass disheartening for sure! One thing they are making tremendous Scientific Research advances + it’s Important not to get too excited but also not to give up Hope! Something I think Barack Obama will thankfully bring after 8 Horrendous Years of Bush + his Brainwashed Flock Vetoing Funding + putting Roadblocks up against Embryonic Stem Cell Research!! Outrageous + beyond all belief!!
S.D. Banker Supports Stem Cell Research
Philanthropist Makes $30 Million Donation To Calif. Research Group To Sidestep State Ban
Sanford Health of Sioux Falls, which got a $400 million pledge from T. Denny Sanford last year, has vowed to cure Type 1 diabetes using regenerative medicine. Officials at Sanford Health say the latest donation won’t directly affect their diabetes effort.
The philanthropist said Type 1 diabetes is one of several diseases that could benefit from stem cell research.
The donation “makes sense because I believe that stem cell technology may be a significant part, if not the major (driver) of medicine in the future,” Sanford said Tuesday.
While I’m close enough to the City to head in, the T1 focus is leaving me back in the ‘burbs for the day. (I may be able to do more good out here anyway: it looks like the next town over is having a health fair… possible opportunity for person-to-person outreach)… What I’d be interested in learning is whether or not research is being conducted on the different etiologies of what we now call “diabetes”, with emphasis on better differentiation and therapy from the time of diagnosis.
Being a middle-aged, mostly bald with a touch of gray, 46 year old person with Type I diabetes for 39 years I often wonder if any of the current research is relevant to my life, especially the next 20 years or so. Most research I see focuses on people much younger than me, or with Type II, or with terrible control problems. Sometimes I think I’d get much more medical attention if I simply screwed up more often. However I’ve seen enough people, including my brother, die from diabetes that I don’t want to take that risk.
How do current research efforts offer hope for someone like me? Will I simply be too old by the time any cures become a mainstream practice?
I really want to hear the media start distinguishing between Type 1 and Type 2 diabetes when they report on it. I’ve often heard news reports that sound promising, only to research and find out it’s only for Type 2 patients. Or my friends or family get really excited about something they hear or see, and I have to burst their bubble and let them know that it doesn’t apply to me (a Type 1).
As far as how I respond, I typically assume nothing will be done in my lifetime (I’m 27). I was promised a cure by the time I was a teenager, and that didn’t happen, and now I look at the new research studies and they all seem to have a testing lifespan of 10-20 years, and who knows what will happen in that time. So, I check my blood sugar, I adjust my insulin pump, I count my carbs, and I keep going with life. I pay attention to what’s going on in the research community, but I don’t have many expectations from them.
1974…. I remember when all of that came out… I was diagnosed in 1973 at age 12. The first 5 years of my diabetic life I did a horrible job controlling my diabetes because I thought it was pointless doing all the things I should be doing because I believed I’d be cured soon. While I still believe there will be a cure someday I’m very cynical about every research report I read. It seems that you have to follow the advice of…follow the money.
I’ve been diagnosed in 1981 at age 16 and always believed that there’s going to be a cure but as each year went by I started to loose hope. Reading about companies that are busy with a cure and then never hear about them again made me believe that some of these companies are just saying things to get attention and get their names in the news.
The commercial of the guy on television that looks so happy about his new meter and is playing his guitar, is sending the wrong message to people that don’t know of any better (Including President Bush).
I think Diabetes is all about money and we will probably not see a cure if we sit back and do nothing. People like Amy is playing a big role in getting our message out there and with today’s technology and the internet we have a much better chance to find that long awaited cure for this terrible disease.
It’s hard to hold on to hope when all the hype causes frustration. 23 years and minimal accomplishments. Technology, intellect and money have done nothing to impress unless you’re counting how they’ve made your glucometer smaller and quicker or designed a better insulin pump. Yes, the management tools are better but still leaves me asking, ‘where’s the cure?’ What else frustrates me?!?
1. The ten years it take to test a possible cure.
2. The non consideration of being a candidate because I’ve taken care of myself and maintained control. (Where’s my reward?)
Who believes in the hype? Not me. I did at one time. The hype will remain with the inexperienced and uneducated.
I emphatically agree with Jenni that the media should better distinguish between the two types of diabetes. Being in the minority of Type 1, it drives me crazy sorting out the misunderstandings and flat out misinformation about T1that arises because people are talking and assuming the subject is T2. Even diabetes-specific websites require some attention to narrow in on just T1 related stuff.
Both my son (3) and I (24) are type I. Since he was diagnosed, I’ve really started asking myself if I’ll ever see a cure.. let alone him. Something tells me that too much money is made by diabetics (especially type I) that even if a cure was close, big companies would pay to hide it. I want just a little bit of hope even…proof that we are getting close. We will ever get that?
People there’s too much frustration out there.
Yes a cure has not been found yet. But let’s also look at some of the upsides: a) Life expectancy with Type 1 has increased a lot over the past 30 years, b) complication rates are down, c) new insights, new insulins and new technology have made almost normal lifestyles (and more) possible for PWDs and d) the world is much more aware of the problem thanks to organizations like JDRF, CWD and information flow through the internet. Sure pharma companies and others have Type 1 franchises and make money out of the problem. And its a very complicated problem. But more people than ever are working on it. The biology of diabetes is only now coming to light. Much of the stuff in the headlines 30 years ago has actually happened (glucose meters, analog insulins, cell transplants, pancreas transpalants, cgms….) and development has been steadily accelerating since the mid 90s. So be critical and sceptic, but not cynical and don”t give up hope. Let’s take a bet on a cure (for all practical purposes) by 2015. Any takers? $ 100?
I too would like to see more differentation between Type 1 andType 2 diabetes. They are Not the same. I can’t tell you how many professionals don’t even know what a Type 1 goes through on a daily/ nightly basis. More public education about Type 1… more research on cures.. not research on the other stuff. My hope is with Dr. D Faustman!
The “cure” for type 1 could be islet cell transplants, but unfortunately the post-transplant immunosuppression regimen is far worse than the diabetes, at least in my opinion.
There are islet transplant studies out there that do not involve immunosuppression, but call for replacement of the islet cells every 6 months or so. That sounds pretty good to me, to undergo a procedure twice a year in order to be insulin-independent. How do we get that off the ground in the US?
Alternatively, a cure could come about from shutting down the auto-antibodies and then doing the islet transplant with the hope that the auto-antibodies will not return (that is the theory of the Rituxan studies; knock out the B cell population, the auto-antibodies disappear and don’t come back, so the remaining islet cells are protected).
I don’t know very much about stem cell research, but there is promise there. Cloning a diabetic’s few remaining beta cells could also restore the ability to produce insulin. Again, though, keeping the auto-immunity at bay is the challenge.
Enough with the media hype about the cure, though — it’s sensationalistic reporting that annoys me. I remember a comment a co-worker made shortly after my diagnosis: “Type 1 diabetes? The Steel Magnolias kind? Wasn’t that cured in the eighties?”
Hype. I’ve been a type 1 for almost 20 years and remain a skeptic. Scratch that. I remain downright pessimistic.
I would like them to tell me, once there is a cure (you know – for ANY disease beyond polio), how it will be disseminated to the millions of diabetics worldwide? – like the ones in the IDF’s Life for a Child program who can’t afford insulin and die in the first six months after diagnosis, or those of us who’ve carried this burden most of our lives, or the little ones who were just diagnosed… Have we EVER really cured a disease? And how would we decide who gets that cure?
I just want quality of life and cost of treatment to be improved upon. If the research for a cure can move us in that direction, my donation dollars are nevertheless well-spent.
I am now in my 30th year living with Type 1. people hear diabetic and assume type 2. With all the related why didn’t you do this, why didn’t you do that, and my favorite from a former employer, we don’t care what diabetes it is ‘just “fix it”. So now I have decided that during the month of November I am going to wear a shirt that says: Ask me about MY diabetes, and another one I am thinking of is : Stand Up if your pancreatic challenged!!
there have been alot of advances since my diagnosis at age 9, I will give you that, but, we are money makers for the drug companies, I don’t see it changing.
I am not a CDE, not a physician nor a nurse. My education is 30years of diabetes. I share my story, I answer there questions, I keep a hope in my heart that my little 9 yr. old cousin will see a cure in his lifetime.
I don’t put much faith in snake oil type cures promoted out there for either type 1 or 2, I do believe that one day there will be a person or group of people who will look beyond the dollar signs, and find a cure.
I DO live in NJ, near to NYC, and would love to attend. However, I just looked at the registration form, and here’s what it says:
Reservations are required and must be received by Monday, October 13, 2008.
Apparently it’s already too late to register. Shucks!
I would like to see Type 1 and Type 2 diabetes differentiated AND an acknowledgement of the prevalence of Type 1 diabetes. All the various news reports use the seriously outdated “Type 1 diabetes represents 5 to 10% of all diabetes.” Yet those percentages exclude most adult-onset Type 1 diabetes, and adult-onset is far more prevalent than childhood-onset Type 1. Also, “older” Type 1′s (cutoff age 35 or 45, depending on the trial) are excluded from clinical trials–why is that?
The thing that really bugs me is the constant talk about obesity with regard to diabetes. Yes, there is a link, but it’s not that simple and the media seem to report that if you are overweight, you will get diabetes. This creates a huge stigma for those with diabetes, and does a hell of a lot of damage in terms of people being afraid to talk about their diabetes, feeling guilty for being overweight etc. I think the reporting needs to be really sensitive to this issue.
Lauren, have you heard of LCT in New Zealand? I don’t know too much about it myself, but apparently they just got approval to do human trials in New Zealand for their porcine islet cell transplants. From what I understand the islet cells are encapsulated in a seaweed compound and then injected. According to the reports they are anticipating it to work for around 10 years before needing another injection, and it doesn’t require immunosuppression drugs. Something to look into, at any rate.
But seriously, I’ve lost hope. Let’s face it, anyone who has had diabetes for any length of time as of today is out of luck even if they do discover a cure. By the time a cure was approved (at least 10 years away) and insurance companies start covering it (another 5 to 10 years away after approval) it won’t do much good for those of us who already have diabetes. A cure isn’t going to reverse already suffered complications/damage.
And I agree 100% that there needs to be more public awareness on the different types of diabetes. I am sick to death at constantly receiving stuff in the mail to help me with my diabetes and it’s all aimed at type 2. I’m sick to death of 10+ years of explaining why I can’t just take a pill and why I got diabetes when I’m not overweight.
I’ve given up expecting a cure; it has become clear to me that it is just not profitable for anyone to find a cure. Can anyone explain to me why Dr. Denise Faustman, who has cured diabetes in mice, cannot get funding from the NIH, ADA, JDRF or anyone else to keep her research going? New meters, pumps & CGMs are all nice but personnaly I can do without them and I’d rather see the money going towards a cure. Bayer came out with an ideal meter, the Dex; small, lightweight, self-contained and then improved it by taking away all of it’s advantages making it bulkier and heavier. The new pump/CGM combos, particularly the RF models show promise but will bankrupt either you or the insurance companies. We need the cure, not maintenance products!
How come we never hear anything about adult stem cells? Embryonic is controversial and hasn’t cured anything yet…but adult stem cells have! I just wish we heard more about this! I too wonder why Dr. Faustman’s research will not be funded…makes no sense!
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http://www.pumpwearinc.com/index.php?page_id=468
let me know what you think
The risk of diabetes is increasing day by day any many of them are still unaware of it. Is it true that only in USA, the number of diabetics has crossed the 23 million mark ooh as in. This is the right time!
[...] is it giving us true hope or just a bunch of pointless, heart-breaking hype? Check out Amy’s write-up about the event and send in your questions for her and the team, including Jeff Hitchcock, Fran Carpentier and [...]