Replies to This Discussion

Permalink Reply by Scott Strumello on February 28, 2012 at 6:42am

My questions are as follows:

Q1: Can you elaborate a bit further on exactly how your most recent findings differ from those of Dr. Peter C. Butler (UCLA 2005 along with colleagues from the Mayo Clinic), or even the work done in 2006 on the Joslin 50-Year Medalists? In effect, each of these prior studies seemed to suggest some evidence of sustained islet turnover in patients with longstanding type 1 diabetes in a setting of continued inflammation. What I am really asking is whether you can articulate for us, in layman's terms, whether your most research findings have merely validated those prior research findings, or whether something truly different has been articulated?

Q2: Beyond this, the assays you have developed seem to be saying that in a majority of patients with longstanding type 1 diabetes (63%), that most patients have evidence of islet regeneration. Clearly, the new assay is more sensitive than prior measures, having detected beta cell functionality in approximately 63% of longstanding patients with type 1 diabetes. Do you plan to examine those who did not have detectible beta cell function to better understand WHY?

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Permalink Reply by Manny Hernandez on February 28, 2012 at 4:51pm

Here's an interview Amy Tenderich @ DiabetesMine.com conducted with Dr. Faustman, in case you can think of any questions to cover in connection with the points she made there:
http://www.diabetesmine.com/2012/02/faustman-research-update-beta-c...

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Permalink Reply by acidrock23 on February 28, 2012 at 5:03pm

Is Dr. Faustman looking for "test pilots"? I will certainly volunteer to take pills, even if they're not the *fun* kind?

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Permalink Reply by gigem99 on February 28, 2012 at 7:52pm

I enrolled in Dr. Faustman's trial in 2009 (or maybe 2010) while I lived in MA. I've been to her lab about 4 or 5 times. I'm currently back home in CO, and it's pretty tough for me to go back. I have another appt. in Oct. of this year (2012).

So, my first question for her is what the protocol is: Will I be needing to go back every six weeks or so for a shot? When will she start the actual shots? When I went back last Oct., I expected to get a shot, but I just had more blood drawn.

My second question is what they are looking for? I do not test positive for GAD antibodies. So, it seems that I do not have a current autoimmune attack going on. BTW, I was diagnosed with T1 27 years ago, and I've been told that after that length of time, it's not unusual not to present with antibodies. I asked her able assistant Nick about that. He said they were looking for specific markers on the "2A protein". He also told me that I was deficient in that protein. What is it they are looking for with that protein? The little bit of research I've done into it is that it is implicated in cancer.

My last question is how long will the trial continue for. I try to time my appts. at the lab with the pumpers support group in Boston. I hope to keep going back there just to see those folks - they are great. BTW, anybody in the Boston area who is pumping or interested in pumping should check that group out - they meet the second Sat. of every month in Woburn.

Tom

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Permalink Reply by acidrock23 on February 28, 2012 at 8:05pm

I'd think that we, of all people, could be qualified to do our own shots? ;-)

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Permalink Reply by JohnG on March 1, 2012 at 4:39am

Only three people received the BCG during the first FDA approved trial.
They had 10 million dollars...the most expensive phase 1 trials in history.
I'm sure they found 3 local people...

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Permalink Reply by JohnG on February 29, 2012 at 4:19pm

How many people will receive the BCG...?

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Permalink Reply by Scott E on February 29, 2012 at 8:22pm

I admire Dr. Faustman's work tremendously and would love to help out in any way I can. I know she's looking for blood donations of both D and non-D donors. My questions are these:

1. What is the biggest obstacle to making progress towards the ultimate goal? Is it (a) lack of funds, (b) lack of biological donations/specimens, (c) regulatory environment, (d) challenges in actual scientific research, or (e) something else?

2. I often read theories (speculative and unsubstantiated, I should add) that the for-profit companies that profit through sales of diabetes care supplies are conspiring to suppress any sort of cure that will threaten their business. Do you believe this to be true, and have you specifically had anyone try to stop you from advancing your research?

3. So far in your research, have you been able to identify what characteristics might make someone a "favorable" recipient of BCG treatment? In other words, to follow Gary's earlier question, what could we as PWDs be doing NOW to qualify when the treatment does become available?

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Permalink Reply by acidrock23 on February 29, 2012 at 8:51pm

Those are really good questions Scott! If we need to smoke and drink martinis to get "in shape" to qualify, I could probably do it?

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Permalink Reply by Scott E on March 1, 2012 at 4:11am

Well, some procedures (most surgically invasive ones) require your A1c to be quite good, as they indicate a better ability to heal. Yet others (pancreas/kidney transplant) require your D to be sufficiently "uncontrolled" so that the risk is worth it.

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Permalink Reply by acidrock23 on March 1, 2012 at 4:32am

I think I could maintain an OK A1C smoking and drinking. I guess I'm already doing ok and drink? I'm just kidding about smoking though. That's too extreme!

I thought that part of the advantage of BCG was that it wasn't hideously expensive, in which case were a protocol to be shown to be effective, they could pass it out with like cookies?

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Permalink Reply by Scott E on March 1, 2012 at 6:12am

Why'd you cross out the "with".... isn't that the whole point? With the amount of money my family spends on Girl Scout cookies each year (and I don't even get to eat them!), you'd think they'd throw in some BCG for free. Kinda like the prize at the bottom of a Cracker Jack box.

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