Meeting Dr. Faustman
In early January I visited the Mass General Hospital research lab where Dr. Denise Faustman is leading research into a possible cure for type 1 diabetes. I was there to give a blood sample for use in this research.
If you've ever met someone you've admired for a while, or maybe a rock or movie star, then you'll know how I felt as I spent time with her.Over the last two years I've taken part in two bike rides to raise funds for this research. But now I had a chance to actually help support the research in a more direct way.
The lab is drawing samples of blood from people with type 1 diabetes, and 'healthy' volunteers. Because they're having trouble getting healthy volunteers, they ask everyone with diabetes to bring a volunteer with them. These folks must not be directly related to you, and not have any auto-immune diseases. I was fortunate that a friend of mine from work kindly offered to come with me. Paul is one of the founders of the yard sale search site GoYarding.com.
I met Dr. Faustman early in the morning. They do all the sample collection early in the morning so it doesn't interfere with work and school schedules. While we talked, she collected four test tubes of blood from me. She explained that some of this blood was tested using machinery they're developing and some was tested manually by one of the researchers. I believe that manual testing takes about one day to complete.
They're trying to accurately measure the amount of T cells that I have. Her theory is that these T cells are responsible for destroying my insulin producing beta cells. These cells also produce amylin. This is now available as an injectable drug called Symlin that I've written about several times.
You can see a short video of Dr. Faustman and an animation of how they believe the T cell process works on the Iacocca Foundation website.
Some of the blood is also sent to another research lab. They have a method for measuring autoantibodies in blood. She explained that autoantibodies are produced when beta cells are destroyed. So if these were found in my blood, that would indicate that my body had recently lost some beta cells. Which would mean that my body is still making beta cells, 35 years after I first got diabetes.
She hopes to start trials before too long where they will be administering low doses of BCG to see if this can destroy these T cells. BCG is used in Europe as an inoculation against tuberculosis, and is also used as an immunotherapy treatment for bladder cancer.
BCG has been around for a long time. As it's already approved for use as a medical treatment, it is likely that getting approval to use this for other purposes will be quicker and easier than for a new drug. It will probably also be less expensive.
Dr. Faustman's hope was that the FDA would permit trials with low number of subjects. This makes it easier to administer the trials because getting enough people is always a challenge and testing the outcomes is easier with smaller numbers.
She explained that there will likely be several trials with increasing doses, so they can determine if it works, and at what dosage levels. Clearly having automated measurement machinery will make this process a lot faster. They've been working on developing this machinery over the last few years.
I told her that it would be wonderful if they started a blog, even a low-volume one to keep everyone informed about their progress. But she's concerned that will take away from research time and also that the blog may draw a lot of comments that would need to be read and handled.
I imagine the entire lab must feel a little like Banting and Best after insulin was first discovered. They had hundreds of parents from around the world contacting them to try and get their children treated. And that was in the days before the internet and e-mail.
It was a real pleasure spending some time with Dr. Faustman and getting an update on their progress. I have another appointment in September to get another blood draw. As Dr. Faustman pointed out, this is an easy way to get the latest news. And by then I hope to have completed another bike ride to support her exciting research. I can't wait!
Labels: bikeride, cure, diabetes, faustman, research
posted by Bernard @ 12:15 AM
12 Comments:
Exciting stuff to be involved in! I hope you'll keep us up to date as much as you can.
bernard,
what an awesome visit that must have been! her research sounds fascinating!
landileigh
Is it a specific type of T-cell? We have quite a few, right? And don't we need most of them? I'm sorry if these are stupid questions, I'm just curious! Sounds awesome to me, and how cool that you got to meet her and participate in this good work.
Beth
I believe it is a specific T cell. I think that's why this measuring work is difficult. They have to distinguish between the 'bad' T cells and the good ones. There's an animation in the Iacocca video that may help.
I remember reading about this in the past year or two. I asked my doc about it, but his response seemed to indicate this would be used primarily to treat new onset diabetics because it wasn't expected long timers would have any islet cells left. Glad to read there is still hope for us long timers and the research is still ongoing! Will they be sharing the results of your tests with you before the general results are published?
Craig
That's the thing that's always excited me about this research. It's not aimed just at people who were recently diagnosed. As I understand it, Dr. Faustman's theory is that we're constantly producing islet cells and that these T cells are destroying them.
As for sharing the results with me in advance of anyone else...I don't think so. I just happen to be a blogger as well as someone who was giving up some blood. I don't have any special kind of status there.
Great post Bernard - very exciting!
Sounds like it was very cool to meet and talk with Dr. Faustman. Thanks for sharing the experience with us!
I'm intrigued by her research, sp. after reading "Cheating destiny". But there's one aspect that intrigues me. Folks who have organ transplants have their T-Cells suppressed by anti-immune medication (cyclosporine/FK-506) to prevent rejection. Yet, these drugs, when tried on normal folks, don't seem to prevent type-1 diabetes, although they are effective in preventing other auto-immune diseases. Do you have her contact information? I would love to get in touch. I think there's a connection between her research and solid organ transplant recipients, who incidentally develop diabetes if they survive the transplant for more than 10 years.
Bernard,
Less than a month after Joseph's diagnosis, the New York Times published their article announcing Dr. Faustman's breakthrough.
After reading it (and so many others that followed), I was convinced that Joseph would be cured within a few years.
Convinced.
A year later, my focus shifted to helping Joseph live with the disease rather than waiting for that cure.
It just hurt too damn much to do otherwise.
But still.
When I saw the title of this post, I thought, "rock star, it's like meeting a rock star... "
So yeah, I'll be tuning in to read more of Dr. Faustman's progress-- and I'll let myself feel hopeful when I do.
That animation narrative is good stuff!! Thanks for posting that link. Wish I lived closer to the Faustman lab. I'd love to donate blood.
Bernard,
This is exciting stuff! Thanks for sharing.
Wow, Bernard. How cool is that?
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