Preventative shots so kids don't develop type 1

This was on the JDRF website. I had never heard of this before. Wondering if this would be suitable for my kids but I couldn't find any more information and the wording on JDRF was vague

That’s because JDRF’s research over many years has led to highly effective ways to identify children at high risk of developing T1D, allowing doctors to give these kids a series of shots—like a vaccine—that prevents the body from initiating the attack that leads to T1D. As a result, Brendan, his wife, and the proud grandparents can experience the normal joys of a new child, without the fear of T1D.

Hmmm. Not buying it. I know they have determined that the development of T1 involves somewhere between 18 and 23 genes. And at this point in technology, I don't believe there is such a thing as a vaccine to prevent a genetic disorder.

I had a peek at their website and couldn't find what you were referencing. Could you post a link? I suspect it's one of those subliminals looking for donations. Anyway, the closest I could find was an article from a couple of years ago citing a theory about the administration of diabetes-specific auto-antigens. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474625/

This was from Feb 2011, and since science doesn't progress that fast, I believe the jdrf is exaggerating the existence of these "shots" to prevent T1. That's my take, anyway. Sorry to be akilljoy.

I think it's generally accepted these days that T1D is an auto-immune response; our immune system gets stimulated by an external pathogen and mistakenly identifies the Islets of Langahans (beta) cells in our own pancreas as the same pathogen. The resulting immune response successfully destroys the mis-identified cells along with the dangerous stuff.

See the 'Virus' sub-heading in the Wikipedia article:

http://en.wikipedia.org/wiki/Diabetes_mellitus_type_1

The article is confused, because the currently accepted 'antibody' test implies that medics believe description I gave is correct; there might be any number of possible pathogens and not all the things our immune system reacts to are viruses (bacteria for example.)

Anyway, a vaccine is a dead, or non-functional, pathogen that provokes the immune system to produce the stuff required to destroy even a functional (dangerous) version of that pathogen.

Therefore, by definition, a vaccine 'against' T1D would actually *cause* T1D, assuming that T1D is caused by an auto-immune response.

If the T1D auto-immune response is caused by a single pathogen then developing a vaccine that promotes an immune response which does *not* attack our own bodies would be an effective way of avoiding T1D: it does *not* prevent it, it avoids it by avoiding the sequence of events that would otherwise case it. It isn't a vaccine against T1D, it's a vaccine against something else that, as a side effect, lessens or eliminates the possibility that a particular one of us might develop T1D.

The JDRF article is here:

http://jdrf.org/blog/2011/vaccines-tackling-the-root-cause-of-type-1-diabetes/

What they are trying to do is *not* develop a vaccine; it is to come up with a methodology that causes the immune system to generate alternative attack paths for the pathogen. Unfortunately lack of originality seems to have prevented their marketing man [Richard Insel] from coming up with a term other than "vaccine".

In the end, however, it comes down to persuading our own immune system that our own bodies are not the problem without, simultaneously, persuading the system there really is no problem at all; AIDS prevents diabetes.

John Bowler

http://jdrf.org/prevention/

Check this out. Click on "read Brendan's story"

They are speaking of trialnet and it is the most important diabetic trial you have never heard of. I wrote a blog about it a few weeks ago and you can find it at this address:

http://www.tudiabetes.org/profiles/blogs/the-most-important-type-1-trial-you-probably-never-heard-of

Trialnet is real and very important. If you are a type 1, live in the United States and have siblings, children or grandchildren, please help get them enrolled. Trialnet will not cure diabetes, but it might stop its further advancement. If they are right and it seems they might be, the verdict is still out, it is possible to end type 1 diabetes in one generation. But only if those at risk are tested, and have take steps to suppress the antibodies that trigger the disease.

I have spoken to my sons and am encouraging them and my grandchildren to take the preventative steps. I hope if you are type 1 and you have eligible relatives, you will do the same. It is is possible this is a major advance but only wide scale participation will tell.

I think they are talking about Trialnet but mixing the subjunctive future with the actual.

Don't get me wrong, I think Trialnet is very interesting, but a lot of us T1's have been used to hearing about "a cure is just a few years away" for half a century now and are a little cynical about research by press release. The Trialnet web pages while optimistic are not outlandish. Same with T1 prevention. Someday I hope us cynics will be proven wrong!

Note that right above "read Brendan's story" is in great big bold graphics "Imagine".

JDRF advertising has always mixed the subjunctive possibilities with the actual. I don't think it's fraudulent but they really are trying to get people's hopes up. Us T1's that have built up a lot of cynicism by being told "a cure is just a few years away" for the past half century, we will be proven overly pessimistic someday, just not yet!

Tim that is true it is not a proven concept but it is one of the best pathways forward. Also it does not only involve children. Older siblings and children my sons are 34 and 32 can participate and I am so high one this largely because it is more than identification it involves experimental treatment of the underlying immune response.

rick

I have been told all of those things for 30+ years too. But, instead of calling myself a cynic, killjoy, pessimist, etc. I would say that I'm cautiously optimistic. I think that Trialnet is very interesting and I, myself will be taking my kids, my sister and her kids to get tested quite soon.

Thank you, excellent blog entry. I am actually familiar with trial net. I spoke to a very helpful rep there maybe 3 years ago. They did say that is basically will give you a risk factor but that's it. My wife and I decided we didn't want to get our kids tested because there is nothing that can really be done if they test as high risk other than worry and be depressed about it. Since I obviously know the signs if I see them we can identify them and make sure they don't wind up in the E.R. Unless I am missing something new, no on ever said anything about "suppress the antibodies"

These are the studies they are running at the moment:

https://www.diabetestrialnet.org/studies/index.htm

Two of them are looking at supplements; oral insulin in one case, "omega-3" fatty acids in the other.

Two of them are immune system based. In both cases chemicals found to help suppress the immune response in newly diagnosed T1Ds, slowing the onset of diabetes, are being tested to see if they help prevent diabetes in people believed to be at risk.

John Bowler

There actually is something new, in addiction to the antibody test, one can qualify for the experimental treatment. There are two for children under 18. I also looked at it several years ago and for the same reason choose not to discuss it with my sons. Today is different however, there is a second part that if the child or young adult tests positive, there are two important trials underway that might prevent or delay the onset of type There is good evidence to support the concept, but again it is not a guarantee. The best I can say is that had this been available when my sons were age appropriate I would have enrolled them in the study and had they been identified in the drug trial.

I get that no one wants to know an outcome they cannot change. But this is bigger issue even if these present avenues are blind alleys we have a chance they are not and we have a chance to significantly help others.

We have pumps today because many people took the risk to try them out, we will have a vaccine tomorrow because people take this very limited risk. I would never want to jeopardize the health of my children or grand children. But in some way if these work (and there is evidence they do) not going down this path is just as risky and maybe more than not doing anything.

rick

You're right Tim. It's one of those "just think if this was possible" kinds of stories. It reminds me of a stupid controversy in Ottawa regarding the Experimental Farm. They decided to no longer give the cows "people" names. Why? Because apparently some kid was mercilessly teased by classmates when she and a cow shared a name. But it turned out to be a hypothetical, suggested by politically correct board members, to prevent a future incident. And a friend's granddaughter loved her "Emily" cow. This is just that sort of story. "Wouldn't it be nice if.....?" And I'm sure it doesn't hurt fundraising either.

Remember when the Edmonton Protocol made it's big breakthrough in 2000? They claimed that within a few years islet cell transplants would be available to all T1s who wanted them. And here we are, 15 years later. How many with islets do you know?

I think, that with diabetes "cures" and "T1 prevention", it's best to expect the worst (a lifetime of shots or pumps) and hope for the best.

There is nothing here that suggests this is any kind of a cure of current type 1's. In fact current type 1's are not eligible for this trial. Please read the trial net material.

This is strictly a prevention study. It is designed to delay or stop the onset of the autoimmune response not cure it.

It is not like that at all, trial net is a legitimate scientific effort, I urge to read about before it before commenting Cora

I wasn't talking about the trial Rick. I was talking about the JDRF posting as though it currently works and is available. That's what Tim and I were discussing. At that point in the conversation, the trial had not yet been mentioned. I'm sorry if I offended you, but you seem also a bit quick to judge other people's opinions.

Again, I wasn't critiquing, or discussing the trial itself. I was talking about how so many people, who haven't been around our "industry" that long, often get their hopes raised by overly optimistic representations of current, legitimate, research.

no offense, I hate bogus cures, but this is very important and casting doubt around it is very tough.

I don't think that's true - both (I think both) of the 'prevention' trials they are recruiting for came out of partial success in 'cure' trials. Both chemicals were originally trialed on people who were already showing diabetes; the hope was to reduce or eliminate the auto-immune response.

Elimination is a cure, so long as it is done quick enough. Even when it isn't elimination of the auto-immune response potentially allows reintroduction or regrowth of the beta cells resulting in a cure.

The issue isn't that they're looking for a preventative mechanism or for a cure, it's that it's being oversold and *that* harms all research.

John Bowler