Break out your wallets kids as Dr Faustman should have phase two in motion sometime next year (three weeks till that ) I believe this will be the most critical phase for Dr F in testing the vaccine to confirm whether BCG would truly have a chance of being an effective treatment for diabetes. Hopefully we will have some good news updates from her as the trial progresses (She is very good with keeping folks informed with her progress). Here is the PDF she loaded up on her facebook account. DrFaustmanUpdate_1111-web.pdf
I already sent a patient registration form. I live 15 minutes away from the Hospital, and at the very least want to donate a blood sample. It would be cool to make it into the phase 2 trials though If I qualified,
I just got the newsletter with that info emailed to me two days ago. Thanks for posting so all could see, Gary.. and Josh, It is great that you will volunteer to donate blood . Living 15 miles away from Massachusetts General is actually such a bonus.
So is my understanding correct that they have some preliminary evidence that BCG can actually restore beta cell function? Correct me if I'm wrong, but I also understood that in some preliminary study they found that while BCG may not completely restore ALL beta cell function (and therefore insulin production), it could potentially restore it enough to reduce the amount of insulin a type 1 requires, thereby providing better control. Is my understanding on this correct?
And the stuff is cheap too. I want to just find some country where you can get the stuff over the counter, get some and start taking it? Somebody needs to sign up for the trials and find out how much of the stuff it takes.
Josh,sorry I wrote 15 miles instead of 15 minutes.. But even closer? Great!!!
While I'm still very excited about Faustman's work..........wasn't she once saying she was working on a CURE? Because now her tune has changed (at least according to what I thought she had said in the past):
"We hope that our efforts will translate into a treatment that can put type 1 diabetes into remission, sparing people with type 1 diabetes the need to so frequently monitor glucose levels or administer insulin..." (emphasis added)
Yeah, my understanding is that once they started trying the BCG, it became clear that it didn't restore beta cell function enough to result in a complete "cure." However, even restoring beta cell function partially could mean far fewer complications and easier management of the disease. It's why BG levels are so much harder to manage once you've had T1D for a prolonged period of time...the more beta cell function you lose, the wackier BGs get.
To be honest, if someone told me I could take a medication and it would make my BG levels more stable, even with the need to still take insulin, I would see that as an improvement, because that would mean I could live a bit more freely...
Are there any serious side effects from BCG?
I was thinking that Phase 2 trials is where they determine how well the treatment works. It may potentially work better on some groups than others. So I'm thinking at this point they still don't know.
If you look back at Dr Faustmans previous statements she does suggest that there likely be another part of the therapy to possibly restore complete insulin production. BCG alone may kill off the bad T-cells but its not likely to offer a complete cure. She said the lab is mainly focused on BCG at this point but if I remember correctly they had in the past tested some other generic drugs they felt may help with the regeneration part of the problem. Maybe some people will be fortunate that BCG alone along with maybe a somewhat restricted diet would allow then to throw away the bottle but its anyone's guess. As the old story goes "It aint over till the fat lady sings". I'd rather have some insulin production back for a variety of reasons but to me I really just don't want to think about it anymore. A big part of living with diabetes as we all know is really worrying about our sugars and how to correct them. If we can't accomplish a life free of that then we have fallen short. In thinking about it if Viacyte can eventually get their stem cell transplant treatment approved it may help to also use BCG to keep the immune system quiet.
Excellent points, Gary.
I know someone who's been T1 for over 40 years. He had a serious infectious disease that didn't respond to antibiotics, so was given gamma globulin. During the entire time on gamma globulin, he took no basal & tiny bolus shots ( 1 unit & less) while eating the same as he always had. Many days, he had staggering lows from 1 unit. Anecdotal, yes, but it gave me some hope that perhaps our beta cells are never completely kaput. He wrote DM researchers begging them to look into the possible beta restoring effects of gamma globulin.
I made a hopeful holiday donation to Dr. Faustman.
I will be making my donation when I get back. Blood and cash. Heh sounds like a punk band.
LOL, who cares? Cures diabetes = worth a few side effects?
I read the wikipedia page and it seems really innocuous, the main side effect was that it was those shots that left the round scar on your arm from the dots? I know I had one when I was a kid but didn't get the scar from it, whatever that means..
Also remember Dr Faustman is very well cherished in the diabetes community and has a huge fan base. I think many people following her research have it in their own minds that she holds the key and that she won't fail. For me these articles help especially when I'm having a bad day to read anything positive in the research area even though I know realistically all these attempts are long shots and a long ways off. All and all I really think Viacyte has the most realistic chance to get us off insulin.
Thanks for the insight. I am only just discovering Dr Faustman, but for me I just want to get more involved. It seems like a shame I never did after all these years at Joslin.
Viacyte? Hmm, will have to learn about this. Thanks again Gary.