Dr. Faustman: Older Patients matter to T1 diabetes research, too

by Elizabeth Snouffer on 03/01/2012

Hope means a great deal to someone with T1 for nearly 4 decades or more

Thank goodness!  As an older type 1 woman (duration >38 years), I sometimes feel forgotten.  Just to be clear, there is no question that I want the cure for diabetes regardless of how much I benefit.

Last week diabetes 24-7 ran a piece, Insulin production (after type 1 diabetes diagnosis) may continue for decades, which discussed a novel ultrasensitive assay (used by the Faustman Lab) that had detected C-peptide in 80% of samples from type 1 diabetes patients at up to five years after disease onset and in 10% of samples from patients with 31-40 years’ disease duration.

That last line was very exciting for someone like me.

However, I had a comment from one reader who essentially said that the Faustman study was not a new finding. Even though I didn’t like the reader’s comment, I never edit comments unless they are offensive.  Opinions are a different breed and this was clearly an opinion.  Dr. Faustman saw the comment dismissing her work, and sent me a response via email:

I noticed that someone commented on your blog about research done in 2005 at UCLA that [the] histology* of pancreases previously showed insulin secreting cells in people who died from diabetes.

Actually, some of the histology evidence extends much further back than that by a couple of decades.  About 30 years ago, Dr. Alan Foulis was probably one of the first (correct us if there is an earlier series of papers as well) to observe islets in the pancreas of long-term diabetics…but most scientists shunned the data.  Many endocrinologists did not think that seeing an islet on histology (dead tissue) meant that the islet made insulin (ie actually functioned.) Dr. Foulis proposed that histology equaled function, but this wasn’t widely accepted. Indeed, using the common assay, the C-peptide levels in the saved serum of the deceased patients he studied were always negative therefore adding weight to the fact that histology does not equal function. Therefore, there was a discrepancy between histology and C-peptide assays, or, as many thought, histology does not equal function…and, to the patient, the only thing that counts is whether the islet makes insulin. Other pathologists over the last 30 years, icnluding recent studies, have also confirmed the Foulis data and also saw the rare islet in the pancreases of deceased patients.

Then, Dr. King chose to study the very rare and very lucky long-term surviving diabetics with > 50 years of disease and, using the standard assay, saw C-peptide in those rare patients who had this remarkable long disease course.  As we show in our recent paper, the standard assay in longitudinal studies is negative for almost all patients with long term diabetes except – only rare survivors have C-peptide.   After about 2 years, all other patients do not have detectable insulin from the pancreas as has been known for years and years with the standard C-peptide assays used around the world.

Now, using a highly sensitive assay of C-peptide function, we see? that the disease course is different than was widely accepted. The majority of patients have sustained C-peptide at gradually decreasing levels over decades…and it is not only the rare 50-year survivors that benefit. Our paper quotes many of these past studies to give full credit to all.  Indeed, since the world is still trying to capture only new-onset diabetics for interventional trials since “they only have remaining C-peptide”, we think all data as a whole suggests new onsets should not be the only ones enrolled in these types of trials and with this sensitive assay of our recent paper the 30 years discrepancies between histology and function may be solved to the benefit of diabetics.

Dr.  Faustman, thank you for taking the time to clarify where your research stands in relation to older studies aiming for a similar target.

* Histology, (the study of tissues) or microanatomy, provides valuable information on the functional morphology of man and animals.

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{ 1 comment… read it below or add one }

Gary March 3, 2012 at 04:00

Elizabeth,

We are running neck and neck as I’m in this 37 years. I see you have lived a very normal life despite the diabetes where I on the other hand live like an alien. I have a ton of trouble with glucose level sensitivity and more or less walk around in a state of distress often. I am looking into whether or not I have an additional underlying problem but I don’t have much confidence. Anyway I’ve been a fairly supportive of Dr Faustman over the years despite the realistic odds of this being the holy grail. To be honest I think it will be a very long shot that something as simple as BCG would be able to get especially us longstanding sufferers off insulin but I am hoping I am wrong. Of all the potential treatments on the horizon I think our most realistic shot will be Viacytes approach being Encapsulated cells from stem cells. They seem to have solved the main problems that have been keeping transplantation dormant to us. We just need to hope they don’t run into any problems with safety using stem cells. They are hoping to start human studies by mid 2013 and I hope to god I have a chance to participate in that study.

God Bless,
Gary

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