A Must-Read Article about Massachusetts T1 Clusters: Please read and discuss


(rdgove) #1

This is a must-read, especially for those in MA. Also, the part that talks about whether JDRF is actually invested in finding a cure is interesting. Dr. Faustman's allegations that it's more lucrative for scientists and companies to keep funding support systems for diabetics rather than cures is very compelling and should be discussed:

http://www.bostonmagazine.com/articles/outbreak/page1


(paulg765) #2

Thank you for that link.  You're right... although it's very distressing, this article is a must read.  It is particularly interesting what happened to Dr. Faustman when she was pursuing very encouraging research to a cure.  (I wonder what the drug was that she had been investigating as a possible cure.) The article was published in 2/09, so I am also curious about what has happened since.


(paulg765) #3

The drug Faustman is investigating is "BCG", which is a generic FDA-approved vaccination for TB.  She administers it in larger doses than is used for the vaccine.  Here is the link to her website:  Faustman Lab Website.  You can read about the research and ongoing clinical trials.  This is good stuff!


(DDrumminMan) #4

This doesn't surpise me at all one teeny weeny bit.  It has been discussed on here many times by me and others.  Well, on a positive note, it does validate my cynicism.


(Anonymous) #5

Thanks for posting this. I have known about Dr. Faustman since last May. Her research is what re sparked my interest in advocacy. It does bother me that her research was dismissed by JDRF.


(Eric_Carpenter) #6

The article was interesting, but did not do a good job of using a neutral tone of voice.  For this reason I feel a bit of devil's advocate must be used.  The article fails to mention any of the other reasons why this research might have been shunned...is there something wrong with the method, is there a lack of credible evidence? This would be an excellent time for JDRF to make a statement about why the research was not funded, although I can understand why they might not.  The article uses a tactic that touches our hearts, but does not indicate anything with scientific certainty...that parents repeatedly see connections in diagnoses.  The plural of anecdote is not data, and at minimum something like a chi-square test should be done.  Preferably multiple areas should be compared for differing rates of diagnosis.  The use of schools is tricky, because some students will know each other and be related in multiple ways, while others simply occupy the same educational building.  This involves crossing and nesting individuals, and calls for use of something like hierarchical linear modeling (this one is beyond me, any stat majors out there?).  Yes, the article mentioned the rate of diagnosis was significantly higher in this supposed cluster, but was it statistically significant?  If so, what was the setup?  Comparing the estimated nation rate to a single area will most likely be different (which calls for testing multiple, equalized groups).  Another interesting element not addressed is standard deviation.  There are likely differing diagnosis rates in different areas of the country, but the numbers will likely follow a bell curve.  The area that was examined might be from the higher end of the bell curve for no reason other than statistical variability.


(sarahslp) #7

Eric, because this article came out a while back (I think I originally read it this winter?), if JDRF hasn't put out a statement, I doubt they're planning to...

I've always thought that JDRF (unlike the drug companies) IS dedicated to a cure rather than maintenance. I mean, it's really a group of members like us. I hope you're right that they decided to fund more promising research.

I've had T1 since '81 and I swear, every couple of years, there's some "promising cure in the pipeline. I've become very cynical b/c they never work out. I'll believe it when I see it!

But, as for the idea of T1 clusters, it does make sense to me b/c something is triggering an autoimmune response. Hmm...


(paulg765) #8

I certainly don't want to promote negativism and cynicism, but even Juvenation, which was "created by JDRF" is "funded through an unrestricted
educational grant from Novo Nordisk."  I have absolutely no reason to question Novo's good work and intentions, but there are commercial interests involved in Juvenation and, I would imagine, other JDRF programs.