Showing posts with label Faustman. Show all posts
Showing posts with label Faustman. Show all posts

Saturday, September 29, 2018

Dropping Four Research Programs

Every year in September or October I write a blog posting which summarizes all research being done in humans, aimed at curing type-1 diabetes.  That blog is going to be published in 2-4 weeks.   While putting that blog together I have found several research projects which I should not cover any more, and I'm listed those here, with a brief note on why they are no longer of interest.

I understand that this posting is a downer, and I'm sorry for that, but it is important to know what studies are no longer looking promising, and why.  Research naturally gets a lot of press when there is good news, but it's important to keep track of the bad news, and the "no news is bad news" situations as well.

Dendritic Cell Therapy  (DV-100) by DiaVacs
This trial was supposed to start in 2013, but never did.  The company is working on a follow on product, DV-200, and when that starts clinical trials I will follow it.  But since there has been a five year break between DV-100 and DV-200, I'm going to wait until a trial actually starts before restarting coverage.

BCG by Faustman at Harvard
This research is being removed for two reasons:
  • Her phase-II trial is not using C-peptide data as either a primary or secondary outcome.  C-peptide is the standard measure for progress to a cure, so not having it as a primary or even secondary outcome means this research is no longer "aimed a curing type-1 diabetes".  (I will continue to follow it, and especially any C-peptide data that comes out, but unless C-peptides are a primary or secondary outcome, it is not cure focused for me.)
  • The phase-I trial extended results show that Dr. Faustman's original theory (the TNF theory) of how BCG might cure type-1 diabetes is wrong.  The paper said specifically that the theory did not explain the results seen, and presented a new theory.  However the new theory is based on how the body digests carbs (not regenerating beta cells), and therefore is not a cure focused theory.  (Indeed, several type-2 diabetes treatments are based on similar theories).  So even if this theory is correct, the result would be treatment, not cure.


Obviously, this research group is continuing to talk about curing type-1 diabetes, but one the rules of my blog is "Actions speak louder than words" and if the clinical trial is not focused on C-peptide data, I don't think they are focused on a cure, no matter what is said.

Rilonacept by White at University of Texas
This group published their phase-I results in June 2018, but they were unsuccessful: "Rilonacept treatment for 6 months is well-tolerated in individuals with T1D of recent onset, but is unlikely to be efficacious as a single agent in preserving beta cell function."  So I don't expect any follow up work.

The Sydney Project (Encapsulated Stem Cells)
I can not find any recent references to this project.  The closest I can find is an encapsulated stem cell project being funded by the Australian Foundation for Diabetes Research.  It is doing animal research right now, so not clinical trials.


Joshua Levy 
http://cureresearch4type1diabetes.blogspot.com 
publicjoshualevy at gmail dot com
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF, JDCA, or Bigfoot Biomedical news, views, policies or opinions. In my day job, I work in software for Bigfoot Biomedical. My daughter has type-1 diabetes and participates in clinical trials, which might be discussed here. My blog contains a more complete non-conflict of interest statement. Thanks to everyone who helps with the blog.

Friday, July 20, 2018

Dr. Faustman Publishes Follow On BCG Data From Phase-I Trial

Dr. Faustman published a paper [r2] and a poster [r1] that contained results from an extension to her Phase-I trial [r17].  These results have generated a lot of buzz, and the study was complex, so this is going to be a long post with four sections:  First, a quick summary.  Second, a more detailed discussion of her results.  Third, a discussion of the buzz surrounding those results.  And fourth, a discussion of where her research goes from here.  The [dN] marks mean that there is more discussion about this point at the end of the blog post, and the [rN] marks are references which are also at the end of the posting.

I've written a total of 18 blog entries on this line of research over the last 10+ years, and you can read them all here:  https://cureresearch4type1diabetes.blogspot.com/search/label/Faustman

The short history is this: Dr. Faustman is trying to cure type-1 diabetes by using BCG, a widely used tuberculosis vaccine.  Dr. Faustman published phase-I clinical trial data in 2012, and is now publishing data from an extension to that trial. 

Quick Summary of Results and Importance

All of these points are discussed in a lot more detail below, especially including the data they are based on, and how I got from the data to these summary points:
  1. C-peptide is the FDA, researcher, and industry standard for evaluating cures for type-1 diabetes, and the C-peptide data reported here shows the BCG did not cause a rise in C-peptide levels.  These results mean that this extended phase-I trial has worse results/is farther away from a cure, than the initial phase-I study reported years ago.   The first phase-I showed tiny increases in C-peptide, but here, no clinically significant increases are seen.
  2. A1c data is generally used to evaluate treatments for type-1 (not cures).  The A1c data is the best data reported here (an improvement of about 0.8), and is similar to several other treatments already available or in later phases of clinical trials.  All the data presented here is based on a very small number of people who actually got BCG (3 people in some cases 12 in others).  Furthermore, it is inconsistent.  At some points in time the BCG group did worse than the control groups, while at other times they did better. 
  3. Dr. Faustman had a theory as to why BCG could cure type-1 diabetes.  The paper is clear that the A1c results seen here are not caused by this theory.  The paper presents a new theory to explain the cause of these results.  
  4. There is a phase-II trial underway (with results expected in 2023), so we will have more data then.
  5. And finally, the primary end point for the phase-I trial was autoreactive t-cells, and this extension to the phase-I trial did not include data on autoreactive t-cells, which means the clinical trial was unsuccessful.
Results and Discussion

As with all science, the important information is the results of the study, so let's take a look at the data presented (and the data that was not presented):

A1c Data
Graph is from Dr. Faustman's paper, and is presented
 for educational purposes only.

The best data in the paper was A1c data.  The graph at the right (taken from the paper) shows the A1c numbers for the people treated with BCG (in red) vs. two types of control groups (in black). [r2]

You can see that the people treated with BCG had worse A1c numbers for the first two years after the treatment.  They then improved noticeably for the next two years, and then gradually increased for the next four years.  Overall the patients had worse A1c numbers for the first two years, and better for the next six years.

Importance of the A1c Data

For me, this data does not support the idea that BCG is a cure for type-1 diabetes.  It doesn't even support the idea that BCG is a treatment for type-1 diabetes.

First and most importantly, A1c data is typically used to measure treatments not cures [d1].  This is for a very good reason: many things, unrelated to a cure, impact A1c numbers.  Being more aggressive about insulin dosing,  going on a low carb diet, using a CGM, or taking an SGLT or GLP-1 drug can all impact A1c numbers as seen here [d2], but none of them are a path to a cure.

On the other hand, the only thing that impacts C-peptide numbers is the body generating its own insulin [d3].  That is why researchers commonly use (and the FDA expects) C-peptide as the end point for clinical trials aimed at curing type-1 diabetes [d5].   Generating your own insulin and maintaining that production is what cures type-1 diabetes, and it is exactly what C-peptides measure.  This is an important point and discussed in detail in [r9] (the conclusions of the D-Cure workshop).

Second, the data above in inconsistent: worse for two years and better for six.  If you are going to argue that the good numbers (3-5 years out) are really caused by BCG, then you have to assume that the bad numbers (0-2 years out) are also caused by the BCG.  After all those numbers are closer to the BCG dose.  It seems much more reasonable to me to assume that neither the bad numbers nor the good numbers had much to do with the BCG dose.

Third, existing treatments have already shown better and more consistent improvements in A1c than are seen here.  These are described in more detail in [d2] and [r11-13].  If I wanted to get excited about new treatments for type-1 diabetes, BCG would get in line with the many treatments which have stronger evidence in larger clinical trials [d10].

Fourth, the eight year data is based on 3 people, and the five year data on 12 people, and there are two problems with these numbers.  The big, obvious problem is that they are tiny, especially the 8 year data [d6]. The second issue is that more people were added after the end of the phase-I trial.  This is unusual.  Normally an "extension" or a "follow on" trial simply follows the same group of people (or a subset) for a longer period of time.  It's quite unusual to see new patients added after the end of the trial as described by the clinical trial registry.   

The A1c results also have a serious problem with "results switching" described [d7] and [r16].

As a side note, even as a measure of treatment success, A1c is falling out of favor as compared to "time spent in range" and quality of life measures as proposed by the "Beyond A1c" movement:
https://diatribe.org/public-workshop-outcomes-beyond-a1c-brings-patient-preferences-fda

C-Peptide Data

As stated previously, C-peptide numbers are the best measure of progress towards a cure [d4], so these are the numbers we should pay the most attention to.  Here are a few quotes from the paper: 
"The BCG-treated type 1 diabetic subjects at year 4 after glucagon challenge had a negligible to no return of clinically significant C-peptide. "
"The human pancreas after BCG even at four years after repeat vaccinations did not secrete significant insulin as clinically measured by C-peptide."
"Therefore we concluded that BCG vaccinations did not induce a clinically meaningful return of C-peptide levels in the pancreas by regeneration" [r2]
The paper reported that at 4 years (the point of highest A1c effect) the C-peptide numbers for the treated patients were "in the range of 2–3 pmol/L."  Table 1c in the paper included C-peptide numbers, but the numeric data was not included in the paper or the supplemental materials.  My eyeballing of the data is that the control group started off just below 2 pmol/L and the treated group started off just above 2 pmol/L.

Importance of the C-Peptide Data

In terms of measuring progress towards a cure, C-peptide data is the most important data.  When the FDA, EMA, or other researchers evaluate this study, it is the key data they will look at [d11].  It shows no progress towards a cure.  That is bad news for BCG-as-a-cure research.

Several Additional Metabolites

In addition to A1c and C-Peptide data, the paper also reported on a variety of metabolites.  These are various chemical markers of what is happening inside the body.  The purpose of these measurements is to try to figure out what was causing the changes to A1c seen in the study.  If you care about these details, then I urge you to read the paper [r2].

The statistically significant differences between people with type-1 who were given and not given BCG are summarized as follows:
In the purine pathway, adenine, N6-carbamoylthreonyladenosine, 7-methylguanine and N2,N2-dimethylguanosine all statistically showed significant increases in BCG-treated T1Ds compared to untreated T1Ds [r2]
Autoreactive T-Cell Data

This study reports on an extension to the phase-I trial, but it does not report on the primary outcome of that study (autoreactive t-cells) [r6].  In the world of clinical trials, this means this extension to the phase-I trial was unsuccessful.

A clinical trial is considered successful if there are good, statistically significant results for the primary outcome, using standard data analysis.  You can read a lot more about this definition here:
https://cureresearch4type1diabetes.blogspot.com/p/recently-on-couple-of-occasions-ive.html
The key point is that not reporting on a primary end point, means the trial has failed.

The autoreactive t-cells results were involved in the "results switching" described [d7] and [r16].

The Change of Theory

Until this publication, Dr. Faustman believed that BCG worked by causing the body to generate more TNF, and this TNF caused the body to generate fewer autoreactive T-cells [r17].  Fewer of these bad T-cells resulted in a cure [d9].  She has published a few papers and edited a book on this theory [r10].

However, in this paper she makes it clear that this theory is not causing the A1c changes.  To quote her paper:
"The mechanism for lowered HbA1c values was not equivalent to the NOD [non-obese diabetic] mouse pancreas regeneration after BCG treatment" [r2]
And the paper describes a replacement theory:
"[BCG causes] a cellular switch from primarily oxidative phosphorylation, a low glucose utilization state, to augmented early aerobic glycolysis, a high glucose utilization state associated with high purine metabolism" [r2]
BCG lowers A1c by changing the way the body uses glucose, so that it burns more, which lowers blood glucose levels and therefore A1c numbers.  The new theory and the old theory are completely different.  Among other things, the old theory was based on immunology, while the new theory is based on glucose metabolism.  The new theory could replace the old theory, or both could be happening in parallel.

The Importance of The Change In Theory

Initially, I didn't think this change mattered much.  I'm much more focused on the question of effectiveness than mechanism.   (Put another way: I want a cure for my daughter, and I don't care exactly why it works, so long as it does work.)  But then I realized the implications of this change in theory.

BCG has finished a phase-I clinical trial.  At this point, most drugs would have two reasons to think they might be successful: the results of their phase-I trial and the results of the previous animal experiments.   That means that even if the phase-I trial was unsuccessful, the researcher could still rely on the animal trials for motivation, and try another human trial to capitalize on whatever good results were seen in the animal studies.   This is particularly important for BCG because the phase-I trial did not lead to successful C-peptide numbers.

However, Dr. Faustman is now saying that the TNF theory did cause the good results in mice, but is not causing the good results in people.  So therefore, it is hard to go back to her animal research to get support for her current human research.  And the human research itself is not yielding good results [r21].

Why The Hype?

A big part of the reason this study is important, is because of the buzz it has generated.  Therefore, understanding where that buzz comes from is important.  In my opinion, the results from the paper don't merit much excitement.  The hype comes from the news coverage of the press release, and I think it is always a mistake to react to hype in press releases when the underlying paper does not generate the same level of excitement.  This is a general problem in medical research and I'd recommend reading the articles listed here [r14].  Those articles cover the problem from several different points of view.

 The press release starts out with this sentence:
"Long-term follow-up of participants in clinical trials of a generic vaccine to reverse advanced type 1 diabetes finds significant clinical benefits, including restoration of near-normal blood sugar levels." [r3]
Consider the word "reversal", which is often interpreted to mean "cure".  (Compare "drug X reverses disease Y to "drug X cures disease Y".  Same meaning.)  Reversal is also in that first sentence to refer to results in people.   However, in the body of the paper, different forms of reversal are used 5 times (3 times for mice, 1 time to say the results did not include reversal, and 1 time for speculation about reversal).  Never in the paper was the word "reversal" used to describe the results in people, yet it was used in exactly that way in the first sentence of the press release.

Also, the press release uses the term "near-normal blood sugar levels" repeatedly.  Many newspapers interpreted this to be near-cure, and wrote their headlines accordingly.  But let me ask you a simple question:  If someone has type-1 diabetes and uses a lot of technology and generally works hard at treating their type-1, and has an A1c in the mid or low 6s, would you describe that as "near-normal blood sugar levels"?  Maybe.  But that says nothing about if they are close to a cure for type-1 diabetes.  Saying "near-normal" generates a lot of hype, but a cure is based on not needing to constantly treat your type-1 diabetes.  And the study is clear:  No one treated their type-1 diabetes any less because of the BCG: not fewer blood checks, not less insulin.  Everyone continued their standard care: dosing for what they ate, counting carbs, and anything else that we would associate with type-1 diabetes [d8].

The subtitle of the press release is:
"Mass. General study finds novel mechanism underlying stable, durable blood sugar control" [r3]
Now take a look at the previous graph of A1c numbers.  Does that look stable to you?  Does it look durable?  Not to me.  Quite the opposite, the good results are completely dependent on when you look at the data.  Two years after treatment the numbers are bad.  Between four and six years they are good.  At the end of the study, they are heading back towards where they started.  This is neither stable or durable.

The press release gives specific A1c data for 3 years and 4 years, and the average for the four year period from 3-7 years.  The 4 year numbers are the best found in the study, the 3 year second best, and the 3-7 year time frame the "good years" of the study.  However, the 1st and 2nd years (when results are bad) are not mentioned, and the average presented in the press release specifically excludes those years. It's like calculating a child's GPA but excluding their worst grades.  Of course it looks good, but it doesn't represent their real level of accomplishment.

Where BCG Research Goes From Here

One answer to this question is simple: a phase-II study is already underway, so we just wait until 2023 for those results to be published.  For BCG to be successful as a cure, it needs a specific kind of good news from the phase-II study: C-peptide data which is both statistically significant and clinically significant, and which comes from a large group of people with a good control group.  As a treatment (something taken in addition to insulin) then A1c data is enough.  It would still need to be statistically significant and clinically significant, and come from a large group of people with a good control group.  But all of that is possible from the phase-II trial.

Another answer is this: At this point, both publications from the phase-I trial were unsuccessful.  While an unsuccessful phase-I trial usually ends the line of research, this is not always true.  My guess is that about 20% of the current current phase-II trials are occurring after an unsuccessful phase-I result.  So there is always some hope.

But the real question is, how optimistic should we be about this line of research?  In my opinion, not very optimistic.  Above, I've described why the C-peptide and A1c data in this specific paper don't give me much hope for success in the future.  However, when I look at the (roughly) 15 year history of BCG trials in people, and put this paper into the context of the previous BCG research, I see a couple of additional red flags:

First is the lack of forward progress, given 15+ years / 34 million dollars [r20].  Fifteen years is enough time to get from the start of a phase-I to end of phase-III trials, and $34 million is more money than most academic researchers can spend on one line of research.  But for all that, I don't see any forward progress.  In 2003, we had no data on BCG's curative effect on people.  Now, we still don't have any positive C-peptide data to answer that question.  The hope is that the phase-II trial will answer it in 2023 or so.

Second, is the changing target of the research.  Successful research tends to have one target ("primary end point"), and gathers more evidence and stronger evidence on that target over time.  That is the progress that researchers expect.  However this line of research has changed its target repeatedly.  When the phase-I study started, the primary end point was autoreactive t-cells [r6].  When the phase-I study ended, the headline data was C-peptides [r17], and now this extension headlines A1c data [r2].

Even worse, this paper conflicts with the previous paper, even though they are both based on data from the phase-I trial. The initial phase-I paper showed: small, good results for C-peptide, no good results for A1c data, and support for the TNF hypothesis.  This paper shows no good results for C-peptide, mild, good results for A1c data, and support for a sugar metabolism hypothesis, but not a TNF hypothesis.  Good science builds on itself: the first results might be small, but the next results are stronger.  But here, the next results are not bigger, they are different.  That is not the normal course of scientific progress.

Personal Note

Many people, with wildly different viewpoints, reviewed this blog posting.  I want to thank everyone who spent time on it.  It needed a lot of work, and benefited from every reviewer's feedback.   All mistakes are my own.

Extra Discussion [d-Numbered] Footnotes

[d1] Consider a simple example: injecting insulin.  If you inject more insulin your A1c will go down, but your C-peptide numbers will not change.  A researcher who is treating A1c as progress toward a cure will see injecting more insulin as progress towards a cure.  That is why researchers measure C-peptide to evaluate progress to a cure.

Or consider this: "in the 1990s, the FDA began to approve drugs for the treatment of diabetes based upon hemoglobin A1c (HbA1c) as the outcome. The prevailing belief was that risk reduction could be achieved by a clinical focus on reaching target values of HbA1c" [r18]

[d2]  For instance this slide [r20] presents data from four different groups treated with different type-2 diabetes medicines (two medicines at two doses).  All four of these groups dropped the same or more as is seen here.  And [r21] shows that simply using CGMs can lower A1c numbers in pregnant women about the same as seen here.  And [r22] shows that a new class of drugs (approved in type-2s and being tested in type-1s) called SGLTs lower A1cs about as much as seen here.  And the list goes on.

The bottom line is that the average improvements seen in this study are similar to the average improvements seen in many other treatments, which are much closer to FDA approval (or already have EMA approval) for type-1 diabetes. 

When we look at A1c for people who got BCG over the life of the study, it averages about 6.6 which is about 0.8 below the 7.4 where it started.  (The result is a little worse (about 0.5) if we compare it to the control group, which started at about 7.1).

For comparison, all of these treatments have gotten results similar to the 0.8 improvement seen here in either type-1 diabetes, type-2 diabetes, or both:
    Semaglutide: A1c improvement of 1.5 [r20]
    Delaglutide: A1c improvement of 1.2 [r20]
    CGM use during pregnacy: A1c improvement of 0.6 [r21]
    SGLT2 inhibitors: A1c improvements of 0.5 to 0.8 [r22]

[d3] As an example, When was the last time your doctor said "If you do X, Y, or Z you will have better A1c numbers next time?  We get it all the time.  But when was the last time your doctor said "If you do X, Y, or Z your c-peptide number will be better"?  Never.  This shows both that A1c is a measure of treatment, and why it is not a good measure of a cure.

[d4]  For example the following quote is from the D-Cure workshop of international experts held in Barcelona in April 2007 [r9]:
"It is now an accepted approach to evaluate endogenous insulin secretion by measuring C-peptide levels (with highly sensitive and normalized measurement methods) in response to a physiologic stimulus (liquid mixed-meal) under standardized conditions."
This report goes on to specifically to consider and reject A1c as a measure of a cure:
"differences in HbA1c between treatment and placebo groups are minimal and thus cannot serve as robust measures of efficacy"
[d5] I reviewed all phase-III clinical trials aimed at curing type-1 diabetes in the last 15 years.  These are in the final stage of clinical trials, which lead (if successful) to FDA approval.  There have been 11 by my count, testing a total of 4 different treatments.   Of these, 6 used C-peptide as their sole primary outcome.  None used A1c alone as their sole primary outcome.  One used it as part of a dual primary outcome. Four used other measures as their primary outcome.

[d6]  It was not supposed to be that small.  The phase-I trial was supposed to have 12 treated people and 12 control [r6].  However, for reasons never published, the original trial only gave 3 people BCG.

[d7] Finally, these A1c results represent what is commonly called "results switching" in clinical trials, and this is very dangerous in reporting results.  Results switching is when the researcher says they are going to report one result (and designs the trial to do this), but then ends up reporting on a different result.  One of the reasons the FDA has a public clinical trial registry [r19] is specifically so that researchers need to publicly announce what their end points are ahead of time.  This prevents them from selecting end points to create success after the data is gathered.

Obviously, it is bad when secondary results are switched, and worse when a secondary result is used to replace an unsuccessful primary result.  However, in this study we see the worse form of "results switch" where an unsuccessful primary end point (autoreactive t-cells) is not reported, and replaced with a better, but still mediocre, result (A1c) which was previously not part of the study at all!

There are several articles on results swapping listed here [r16].

[d8] Compare Dr. Faustman's use of language in the press release with Dr. Bernstein's use of language.  Dr. Bernstein uses a low carb diet and aggressive insulin dosing to achieve A1c numbers lower than those reported in Dr. Faustman's research.  His target A1c is 4.5, much lower than Dr. Faustman achieved here.  However, Dr. Bernstein never refers to curing type-1 diabetes.  He is very clear that the low A1c numbers he aims for might be the same as someone without type-1 diabetes, but that is in no way a cure.

To put it bluntly: if you think Dr. Faustman's A1c numbers in the mid-6s represents a near cure, then you would have to agree that Dr. Bernstein's A1c numbers in the mid-4s would represent an actual cure, but no one does that.

[d9] The essence of Dr. Faustman's older theory on how to cure type-1 diabetes is:
  • BCG causes the body to generate TNF
  • TNF causes fewer autoreactive T-cells
  • Fewer autoreactive T-cells results in natural beta cell regrowth and more insulin generation
  • More insulin generation is the path to curing type-1
BCG (Bacillus Calmette–GuĂ©rin) is a biologic that has been given to over a billion people (in low dose) as a tuberculosis vaccine, and is also approved (in much higher doses) as a bladder cancer treatment. It is a generic drug with a very long record of safety.

TNF ("Tumor necrosis factor" or TNF-alpha) is a naturally occurring protein that can cause cells to die. It is involved in the natural regulation of immune cells.

"Autoreactive" refers to immune cells that mistakenly attack the body's own beta cells. The destruction of these beta cells leads to type-1 diabetes. This is sometimes referred to as an "autoimmune attack" because the body's own immune system attacks the body itself.

Many more details are available here [r10].

[d10] For A1c improvements, my standard (which I think is pretty common among both researchers and the FDA) is that changes below 0.5 are not of importance, changes above 1.0 are definitely important, and numbers between these are of mild importance.  So the BCG results (if supported by larger trials) would be in the mild interest area.

[d11]  Here are three supporting quotes:
Clinical studies aiming at preservation of beta cell function should be randomized, preferably double-blind and placebo-controlled and should include patients with a documented residual beta cell function. The primary outcome should preferably consist of co-primary endpoints including not only the change from baseline in C-peptide (e.g. C-peptide AUC) or, if appropriately justified, the percentage of patients with C-peptide increases above a clinically meaningful threshold following a physiological stimulus (e.g. liquid mixed meal) under standardized conditions but also HbA1c, frequency of hypoglycaemic episodes, particularly severe events, or the percentage of patients not requiring insulin therapy or with a relevant reduction in insulin requirements. Any of these endpoints not included as co-primary endpoint should be evaluated as important secondary endpoint. [r22]
FDA and EMA stand ready to approve disease modifying therapies for T1D. and have expressed reasonable expectations for demonstrating efficacy of therapies aimed at preserving insulin secretion in new onset patients. It is unclear what minimum treatment effect on preservation of C-peptide secretion, the regulatory primary efficacy endpoint, would be considered clinically meaningful for a new onset intervention. A small effect size (10-20% at two years) might be enough if the safety profile is very benign. [r23]
And finally, compare these two quotes from [r24]:
Efficacy endpoints. Stimulated C-peptide response is accepted as the regulatory primary endpoint because it is a direct measure of reducing the hormonal deficiency state of T1DM.
Secondary endpoints and their considerations. HbA1c is the gold standard measure of glycemic control, but it is an insensitive measure of improved beta cell function resulting from an intervention. 

Reference [r-Numbered] Footnotes

[r1] The Press Release: https://www.massgeneral.org/News/pressrelease.aspx?id=2262
and the Faustman lab FAQ is here:
https://www.faustmanlab.org/wp-content/uploads/2018/06/FAQs.pdf

[r2] The Paper: https://www.nature.com/articles/s41541-018-0062-8  and this includes supplementary data here: https://static-content.springer.com/esm/art%3A10.1038%2Fs41541-018-0062-8/MediaObjects/41541_2018_62_MOESM1_ESM.pdf

[r3] Abstract of The Poster:
https://plan.core-apps.com/tristar_ada18/abstract/5188446740e191fd289345d56a7ee704
This tweet contains the poster and a little discussion:
https://twitter.com/HangryPancreas/status/1011294476260831233

[r4] Medical Press Coverage:
https://www.medpagetoday.com/meetingcoverage/ada/73696
https://www.statnews.com/2018/06/21/type-1-diabetes-vaccine-denise-faustman/

[r5] ADA/JDRF Response:
http://www.diabetes.org/assets/pdfs/news/joint-statement-from-ada-and-jdrf.pdf
and coverage:
https://www.healthline.com/diabetesmine/denise-faustman-research-pushback-ada-jdrf

[r6] The FDA clinical trial record for the phase-I study:
https://clinicaltrials.gov/ct2/show/NCT00607230

[r7] The FDA clinical trial record for the phase-II study:
https://www.clinicaltrials.gov/ct2/show/NCT02081326

[r8] More than you ever wanted to know about how the FDA evaluates clinical trial end points:
https://www.fda.gov/downloads/Drugs/.../Guidances/ucm071624.pdf

[r9] This report summarizes the conclusions of the D-Cure workshop of international experts held in Barcelona in April 2007 and the current recommendations and updates in the field:
https://pdfs.semanticscholar.org/c337/5ee9865135c7e312417fa7b8b04b9564c776.pdf

[r10] Dr. Faustman's most recent paper describing TNF as the mechanism of a cure was published in 2017:
    https://www.ncbi.nlm.nih.gov/pubmed/28843039
And she had edited an entire book on the subject in 2014:
    https://www.elsevier.com/books/the-value-of-bcg-and-tnf-in-autoimmunity/faustman/978-0-12-799964-7
And she had several earlier publications on the same (now defunct) theory:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3870411/
    http://www.pnas.org/content/105/36/13644

[r11] https://twitter.com/snp_io/status/1010616966523088896
[r12] https://twitter.com/Fallabel/status/1011280750967246848
[r13] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4265871/

[r14] https://www.theguardian.com/science/blog/2014/dec/10/science-health-news-hype-press-releases-universities
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3735615/
https://www.scidev.net/global/health/practical-guide/progress-or-pr-how-to-report-clinical-trials.html
https://www.healthnewsreview.org/2018/04/a-cancer-doctor-speaks-out-how-premature-hype-about-experimental-drugs-fails-patients/

[r16] These are general references for results switching:
    http://compare-trials.org/blog/are-your-results-unusual-or-how-often-are-outcomes-switched/
    https://www.bmj.com/content/356/bmj.j396
    https://www.enago.com/academy/issue-at-hand-outcome-switching-in-clinical-trials/
    https://www.psychologytoday.com/us/blog/side-effects/201604/how-outcome-switching-is-corrupting-medical-research
And this organization:
    http://compare-trials.org/
This abstract is an interesting read as well:
    https://www.nature.com/articles/s41598-017-09553-y

[r17] Initial results of the BCG phase-I clinical trial:
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0041756

[r18] This paper argues that A1c is the right end point to measure treatments for type-2 diabetes:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5350060/

[r19] This is a link to the US FDA's Clinical Trial Registry Site, plus an article about it:
    https://clinicaltrials.gov
    https://www.vox.com/2014/12/6/7344357/clinical-trials-transparency

[r20] Dr. Faustman's Lab has raised about $11 million for their phase-I trial and about $23 million for their phase-II trial:
    https://www.bizjournals.com/boston/news/2016/11/03/mgh-looks-to-reverse-diabetes-with-funding-from.html
    https://www.bizjournals.com/boston/news/2018/06/21/mgh-study-finds-generic-drug-can-reverse-type-i.html

[r21] The two key quotes from her paper are:
As previously published, the elevations in tumor necrosis factor (TNF) from the BCG vaccine stimulate cytotoxic T cell death and beneficial Treg expansion [in live mice and isolated human tissue]
and then:
The mechanism for lowered HbA1c values [in people] was not equivalent to the NOD diabetic mouse pancreas regeneration after BCG treatment
[r22] http://www.ema.europa.eu/docs/en_GB/document_library/Scientific_guideline/2012/06/WC500129256.pdf

[r23] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5748875/

[r24] https://www.tandfonline.com/doi/pdf/10.4161/hv.7.1.14527

Joshua Levy 
http://cureresearch4type1diabetes.blogspot.com 
publicjoshualevy at gmail dot com 
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF, JDCA, or Bigfoot Biomedical news, views, policies or opinions. In my day job, I work in software for Bigfoot Biomedical. My daughter has type-1 diabetes and participates in clinical trials, which might be discussed here. My blog contains a more complete non-conflict of interest statement. Thanks to everyone who helps with the blog.

Wednesday, December 13, 2017

Possible Cures for Type-1 in the News (December)

Here are some "bits and pieces" updates for December.

Update on Dr. Faustman's Phase-II Trial of BCG

Dr. Faustman's lab has published their Fall 2017 newsletter, which you can read here:
http://www.faustmanlab.org/docs/newsletters/DrFaustmanUpdateFall2017.pdf
This newsletter includes more information on her research, especially from the 3rd International BCG conference, The BCG Working Group, and the 2nd edition of the BCG and Autoimmunity book she edited.

There are three pieces of new news there:
  1. The phase-II trial was fully enrolled in Summer of 2017. This is important because we now  know when the trial will end.  Since this is a five year study, they should finish collecting data in Summer of 2022 and publish before Summer of 2023. 
  2. They have given BCG to the three untreated patients from their phase-I trial, so they will have data from six people to report in the future. 
  3. The lab is going to be recruiting for more studies in the future, so would like to hear from anyone who is interested in participating.  No details on future trials were provided.
Another piece of news is that Dr. Faustman is branching out, and trying to apply BCG treatment to Fibromyalgia.  This research is being done in collaboration with EpicGenetics, and they hope to start the trial in early 2018.  If anything applicable to the type-1 world comes up in this research, I'll report it.  Since Fibromyalgia is not generally considered an autoimmune disease, I'm not sure how much "cross pollination" of results there will be.  You can read more about it here:
http://www.prohealth.com/library/showarticle.cfm?libid=30644
http://www.businesswire.com/news/home/20170419005324/en/EpicGenetics-Assistance-Leading-Medical-Centers-Expands-Clinical

DILfrequency Trial Completed

There is a lot of research ongoing on IL-2 which is part of the immune system.  About 18 months ago, I summarized all this research here:
http://cureresearch4type1diabetes.blogspot.com/2016/05/general-update-on-il-2-research.html
with an update here:
http://cureresearch4type1diabetes.blogspot.com/2017/01/possible-cures-for-type-1-in-news.html

One of those clinical trials was called "DILfrequency" and that trial has finished, and the results published.  The purpose of that trial was to develop the best dosing method of IL-2 which could then be used in future trials.  ("Best" in this case, meant a stable and known change in the immune system, which the researchers wanted.)  It was successful in terms of telling the researchers what they wanted to know to prepare for future clinical studies.

There are several IL-2 research projects either ongoing or planned to start (including by this group), so I think we'll get a stronger signal in the next few years.

Journal Article: https://www.biorxiv.org/content/early/2017/11/28/223958
Clinical Trial Record: https://clinicaltrials.gov/ct2/show/NCT02265809

Joshua Levy
http://cureresearch4type1diabetes.blogspot.com
publicjoshualevy at gmail dot com
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF or JDCA news, views, policies or opinions. My daughter has type-1 diabetes and participates in clinical trials, which might be discussed here. My blog contains a more complete non-conflict of interest statement. Thanks to everyone who helps with the blog.

Friday, July 14, 2017

Update On Dr. Faustman's BCG Research

There was some media buzz about Dr. Faustman's BCG research as reported on a poster at ADA 2017.  I can't link directly to it, but you can go to this page:
https://ada.apprisor.org/epsSearchADA.cfm
and search for Faustman to see the poster and the abstract.

Dr. Faustman's research has about 15 years of history, which I've blogged about before, here:
http://cureresearch4type1diabetes.blogspot.com/2014/04/dr-faustman-starts-phase-ii-trial-for.html
http://cureresearch4type1diabetes.blogspot.com/2012/08/summary-of-drfaustmans-phase-i-results.html
And in several other blogs.

But to summarize very quickly: Dr. Faustman's previous research was based on the idea that BCG (a Tuberculosis vaccine) increases the levels of TNF, and higher TNF levels could result in less autoreactive T cells, and this would lead to a cure for type-1 diabetes.  Unfortunately, this did not pan out.  Her phase-I trial showed that BCG did not change the levels of live autoreactive T cells in circulation.  However, using some non-standard data analysis, Dr. Faustman interpreted the phase-I study to show that there was an increase in T-reg immune cells.  T-reg cells get rid of the autoreactive T cells, so increasing the T-reg cell count could also lead to a cure for type-1 diabetes.

What is the New News?

The poster presented at ADA 2017 contained data on a possible mechanism whereby BCG could increase the level of T-regs in a type-1 diabetic.  This mechanism involved changes to how genes are used in the body (called "epigenetic changes").  These changes can be long lasting.  Obviously, a long lasting treatment is better than a short lasting one, so (if this finding is confirmed by more research) this is good news.

Also, although not required, it is nice to have a theoretical basis for why a treatment should work, if you are going to test that treatment. This is particularly true of the BCG research, since the phase-I trial showed pretty clearly that the previous theory was wrong, so having a new theory is good.

How Important Is This?

In my opinion, it is not very important. Why not?  In a nutshell:
1. It's a finding about a possible mechanism of how a cure works, not evidence of effectiveness, for a treatment where effectiveness is the important, unanswered question.
2. It's based on data from 3 people.
3. It's a poster, not a presentation (or a paper).

1. It's a mechanistic finding so it is aimed at answering the question "how does BCG work?", but the important question is "does BCG work?"  That needs to be answered before the "how" question is important.  The results from the phase-I trial were not successful (see discussion below).  Therefore, for me, research into the mechanism of how it might work is less important until we get some evidence that it does work.

2. Dr. Faustman's phase-I study gave BCG to only three people.  It is the smallest phase-I study I have ever covered in the field of type-1 diabetes.  This poster is based on data from those same 3 people, and that is not a large enough foundation to get me excited.

3. As a poster, this is a lesser form of publication, than a journal article or a presentation.  That is not fatal, of course, but it is a handicap.  For comparison, Gleevec and Oral Insulin both merited presentations, so the organizers of the ADA scientific sessions clearly thought that those studies were more important than this BCG result.  (And I agree with them.)

Some Discussion on The Results From the Phase-I Trial

Obviously, Dr. Faustman considers the phase-I trial to be a success, which is why she has started a phase-II trial, so why do I consider it unsuccessful?  For two reasons:

First, the normal definition of success for a clinical trial is successful results from the primary outcome.  Her phase-I trial's primary outcome was autoreactive T cells, and there was no difference between the the treated group and the control group.  So that's an unsuccessful result.

She did report two tiny successful outcomes in her secondary results.  But to get those, she had to do two different data manipulations.  I discussed those in detail in 2012 when the original results were published:
http://cureresearch4type1diabetes.blogspot.com/2012/08/details-of-dr-faustmans-phase-i-results.html
See the section called "Weaknesses in Data Analysis".

A very short summary is:
1. She shifted 1/3 of her control group to be analysed as though it were in the treatment group, after she had seen the results, and saw that would change the outcomes.
2. She did not use a single control group.  Rather, she used different control groups for different outcomes, including (in some cases) pulling data from other studies.

My older blog posting describes in detail how damaging these are to her analysis.  But suffice it to say, if the data shows success, there is no reason to do those manipulations.  And if the data is successful (even at a tiny level), only after those manipulations, then how real is it?

Now, if her phase-II study (which is expected to enroll about 150 people) is successful using standard data analysis techniques, then she can rerun this poster study with data from those 150 people.  She will then have more people and a successful treatment and at that point, a mechanistic study would be interesting. The phase-II study is expected to end around 2023.


Joshua Levy 
http://cureresearch4type1diabetes.blogspot.com
publicjoshualevy at gmail dot com
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF or JDCA news, views, policies or opinions. My daughter has type-1 diabetes and participates in clinical trials, which might be discussed here. My blog contains a more complete non-conflict of interest statement. Thanks to everyone who helps with the blog.

Tuesday, March 21, 2017

Possible Cures for Type-1 in the News (March)

ViaCyte Starts A Three Year Follow-up Safety Study in Subjects Previously Implanted With VC-01™
This clinical trial is studying people who were part of ViaCyte's clinical trial of VC-01™, an encapsulated beta cell cure.  Once the device is removed at the end of the study, the patients can enroll in this follow on study which tracks them for three additional years, looking for adverse effects.

ViaCyte is a commercial company testing an encapsulated beta cell cure.  You can read my previous blogging about them here: http://cureresearch4type1diabetes.blogspot.com/search/label/ViaCyte
They are in the middle of a large Phase-I study, which could finish as early as 2020.

Clinical record: https://clinicaltrials.gov/ct2/show/NCT02939118

Discussion

I'm hopeful that this means that one person has finished the ViaCyte protocol, which is motivating them to start this follow on.  The other option is that they are just planning ahead.  Since there is no control group, the interim data could be published, if ViaCyte wanted.

Two Phase-I Studies Start with Umbilical Cord Treg Cells 
These two studies have a lot in common, so I'm going to discuss them together: first, their similarities, then their differences. Here are the similarities:
  • They are both run by the same researcher (Dr. Zhiguang Zhou) at the same hospital (Second Xiangya Hospital of Central South University).
  • They recruit at the same place: Institute of Metabolism and Endocrinology, Second Xiangya Hospital, Central South University, Changsha, Hunan, China, 410011
    Contact: Zhiguang Zhou, MD/PhD    86-731-85292154    zhouzg@hotmail.com
  • They have already started recruiting 40 people, and expect to finish in 2019.
  • These trials are open to people who have been diagnosed within 3 years and are between 6 and 60 years old.
  • Each has a primary end point which is safety related, and secondary endpoints which are effectiveness related and include C-peptide, A1c, insulin usage, etc.
  • Both studies will work with stem cells which have been harvested from umbilical blood, separated into components, and had the T-reg cells "grown out" for two weeks.  These enriched T-reg cells will be infused into patients.  T-reg cells are regulatory cells which are part of the immune system, and work by controlling other immune cells so that those other cells don't attack beta cells.

The first study is Safety Study and Therapeutic Effects of Umbilical Cord Blood Treg on Autoimmune Diabetes: This study will have two groups, one will get the treatment, and one will be a control group and will not get the treatment.

Clinical trial registry: https://clinicaltrials.gov/ct2/show/NCT02932826

The second study is Safety and Efficacy of Umbilical Cord Blood Regulatory T Cells Plus Liraglutide on Autoimmune Diabetes: This study has four groups.  One will get the treatment and also Liraglutide, another just the treatment, a third just Liraglutide, and a fourth will be a control group.  Liraglutide (sold as Victoza) is similar to exenatide (Byetta), which is a common type-2 medication, but is also sometimes used on type-1.  Victoza is a weekly injection. 

Clinical trial registry: https://clinicaltrials.gov/ct2/show/NCT03011021

Discussion

The researchers are not clear on why they are using Liraglutide, but site its "various benefits for beta cells". They expect it will increase the effectiveness of the new T-regs, possibly by encouraging beta cell growth.

JDCA's Update on Dr. Faustman's Research

An update on Dr. Faustman's BCG research by the JDCA (Juvenile Diabetes Cure Alliance) is here:
http://eepurl.com/cHrGqX

My key takeaway points are:
* The Phase-II trial should finish in 2023.
* They have enrolled 125 out of the 150 they need.
* An 8 year follow up from their Phase-I trial should be published by the end of 2017.

(Remember, I am a fellow of the JDCA and we regularly discuss various research programs, including this one.)
Joshua Levy
http://cureresearch4type1diabetes.blogspot.com
publicjoshualevy at gmail dot com
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF or JDCA news, views, policies or opinions. My daughter has type-1 diabetes and participates in clinical trials, which might be discussed here. My blog contains a more complete non-conflict of interest statement. Thanks to everyone who helps with the blog.

Thursday, February 9, 2017

News From EASD (European Association to Study Diabetes)


Back in October 2016 was the European Association to Study Diabetes (EASD) conference, which is the largest scientific meeting on diabetes in Europe.  Much like ADA, it covers both type-1 and type-2 diabetes. The Europeans are way ahead of the American in terms of on-line access.  The EASD 2016 web site has recordings of many of the talks, and much more content than the ADA web site. You can see it here:
http://www.easdvirtualmeeting.org/

Clinical Trials Aimed at Curing Type-1 Diabetes
The only research which I saw which was directly aimed at curing type-1 diabetes was a talk and a poster given by Dr. Ali from the Cardiff Diabetes Vaccine Development Center (which is part of Cardiff University, Wales, UK).  This is part of the ongoing work by Dr. Peakman and others.

Results of the Monopept1de Phase-I Trial of An Insulin Peptide

This research has been on-going for at least 10 years.  Here is my previous blogging:
http://cureresearch4type1diabetes.blogspot.com/search/label/Proinsulin
The basic idea is to give people with type-1 diabetes an injection containing part of the insulin molecule, which will teach the body's immune system not to attack itself.  The idea is vaguely similar to giving people tiny amounts of peanut protein to desensitize them from peanut allergies.  It is important to remember that type-1 diabetes is NOT a classic allergy.  The analogy is not perfect, but that's the general idea.

The study showed that the treatment was safe and did not trigger any serious adverse effects, or unexpected adverse effects of any kind.  The success/outcome data was weaker.  C-peptide production did NOT increase, but insulin usage went down, and H1c numbers showed a downward trend in treated people.  None of this is strong data for effectiveness, but this trial was aimed at gathering safety data.  The researchers think the safety data is plenty strong enough to support a phase-II study.

Poster: http://www.easdvirtualmeeting.org/resources/proinsulin-peptide-immunotherapy-in-new-onset-type-1-diabetes-is-well-tolerated-and-associated-with-reduced-daily-insulin-usage
11 Minute Talk: http://www.easdvirtualmeeting.org/resources/proinsulin-peptide-immunotherapy-in-new-onset-type-1-diabetes-is-well-tolerated-and-associated-with-reduced-daily-insulin-usage-203021b2-7c50-4239-81b8-84fe0d8a0291
Older Poster On The Same Research: http://www.easdvirtualmeeting.org/resources/proinsulin-peptide-immunotherapy-in-type-1-diabetes-safety-data-of-a-first-in-new-onset-type-1-diabetes-phase-1b-trial--2

This same research group is working on another clinical trial called "MultiPepT1De", which is testing using several different proteins at once.  The trial reported on here only used one. The MultiPepT1De trial was scheduled to finish in Feb-2017, but is running late:
https://www.ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialId=5462
https://clinicaltrials.gov/show/NCT02620332

Other Interesting Talks

Faustman
This was a 15 minute talk by Dr. Denise Faustman, where she discusses a particular chemical pathway (TNFR2):
http://www.easdvirtualmeeting.org/resources/in-vitro-tnfr2-agonism-for-correction-of-treg-activation-defect-in-type-1-diabetes-c96e016f-57c0-4432-9805-9918efcd364e

Viral Infections as Triggers
The talk in the next link discussed looking for viruses in the pancreases of 6 newly diagnosed adults. It is 30 minutes long and has 114 slides: 
http://www.easdvirtualmeeting.org/resources/the-pathogenesis-of-type-1-diabetes-virus-involved-lessons-from-the-divid-study
These researchers are trying to answer the question "does a viral infection trigger type-1 diabetes", by looking at pancreases close to the time of diagnosis.  They did find more viruses in people with type-1 diabetes, but it was low grade persistent infection, not an acute infection.  They were all enteroviruses, no two of the same strain, and the exact virus could not be identified (due to low levels).

Also, they found that 36% of the islets were still producing insulin approximately 5 weeks after diagnosis, which is higher than previous estimates that I'm familiar with.  This definitely comes down on the "viruses are involved in triggering type-1", but the study was a small pilot study, in need of follow up.

Joshua Levy 
http://cureresearch4type1diabetes.blogspot.com
publicjoshualevy at gmail dot com
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF or JDCA news, views, policies or opinions. My daughter has type-1 diabetes and participates in clinical trials, which might be discussed here. My blog contains a more complete non-conflict of interest statement. Thanks to everyone who helps with the blog.

Wednesday, August 19, 2015

Research In The News (August)

This blog posting contains bits and pieces of news on type-1 diabetes research aimed at a cure.

The Phase-II Trial of Secukinumab Was Terminated

The phase-II clinical trial of Secukinumab was canceled in June 2014. I have not seen any public notification about why it was canceled. Apparently five people were dosed before it stopped, but I have no idea if any results will be published or not.  This trial was being run by Novartis.

You can read my previous blogging on this trial here:
http://cureresearch4type1diabetes.blogspot.com/2014/05/secukinumab-and-ustekinumab-each-start.html

Reporting: http://webcache.googleusercontent.com/search?q=cache:-Iu_s9VcSmwJ:adisinsight.springer.com/drugs/800023920+&cd=1&hl=en&ct=clnk&gl=us
Clinical Trial Record: https://clinicaltrials.gov/ct2/show/NCT02044848


Phase-II Trial of BCG By Faustman Starts Recruiting

I made a big announcement when Dr. Faustman announced she was ready to start her phase-II trial. However it took over a year to actually start recruiting patients.  The blog I wrote previously is still accurate (except as described below), so If you want to know what is going on with BCG, I'd start out by reading my previous blog:
http://cureresearch4type1diabetes.blogspot.com/2014/04/dr-faustman-starts-phase-ii-trial-for.html
and then consider the following updates in the last year:

First the good news: it will include 150 patients, rather than 120 as before.

Second, the bad news: the delay means the study will complete in 2023 rather than 2022 as before (which means publication in 2024 is a reasonable goal).

Third, a change in primary outcome.  The study as I read it now, is going to have A1c measurement as it's primary end point, and C-peptide measurement as a secondary end point.  Previously, I had thought that both would be primary end points, but I might have just misread the clinical trial registration.

However, no matter which is primary and which is secondary, the important end point is the C-peptide numbers, not the A1c numbers.  For cure research, C-peptide is a much better measure of success than A1c.  C-peptide is what the FDA requires for cures, and that is what measures how much insulin your body is creating itself. A1c, on the other hand, is a good measure for type-1 treatments.  So in this case, in 2024, when we are looking at the results, it will be the C-peptide results that matter.

I don't see that there are any other major changes from a year ago: no change to dosing regimen and no change to duration.

Press Release: http://www.eurekalert.org/pub_releases/2015-06/mgh-mgh060315.phpClinical Trials Record: http://clinicaltrials.gov/ct2/show/NCT02081326

Joshua Levy
http://cureresearch4type1diabetes.blogspot.com
publicjoshualevy at gmail dot com
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF or JDCA news, views, policies or opinions. My daughter has type-1 diabetes and participates in clinical trials, which might be discussed here. My blog contains a more complete non-conflict of interest statement. Thanks to everyone who helps with the blog.

Saturday, April 12, 2014

Dr. Faustman Starts a Phase-II Trial for BCG

Dr. Denise Faustman, of Harvard, has filed the paperwork to start a phase-II trial testing BCG (Bacillus Calmette–GuĂ©rin) as a cure for type-1 diabetes.  She is not recruiting patients quite yet, but should start very soon.  This study will be done in Boston.

Background

The essence of Dr. Faustman's theory on how to cure type-1 diabetes is:
  1. BCG causes the body to generate TNF
  2. TNF causes fewer autoreactive T-cells
  3. Fewer autoreactive T-cells results in natural beta cell regrowth and more insulin generation
  4. More insulin generation is the path to curing type-1
BCG (Bacillus Calmette–GuĂ©rin) is a biologic which has been given to over a billion people (in low dose) as a tuberculosis vaccine, and is also approved (in much higher doses) as a bladder cancer treatment. It is a generic drug with a very long record of safety.

TNF ("Tumor necrosis factor" or TNF-alpha) is a naturally occurring protein that can cause cells to die. It is involved in the natural regulation of immune cells.

"Autoreactive" refers to immune cells which mistakenly attack the body's own beta cells. The destruction of these beta cells leads to type-1 diabetes. This is sometimes referred to as an "autoimmune attack" because the body's own immune system attacks the body itself.

A timeline for Dr. Faustman's research can be found here:
http://cdn.knightlab.com/libs/timeline/latest/embed/index.html?source=0AgnCSepg2XrIdGNMY3FVTy1UTHc4WW1MaklhdUxaVkE&font=Bevan-PotanoSans&maptype=toner&lang=en

But the important milestones are:
  • Dr. Faustman announced cures for NOD mice in 2002-2003
  • Dr. Faustman ran a phase-I trial in people from 2007 to 2012
  • Dr. Faustman is starting a phase-II trial, now (in 2014)
This Trial

With all that as background, here are the key design points for the phase-II clinical trial, all taken from the clinical trials record:
  • 120 people involved.
  • Some will get BCG, some will be part of the untreated, placebo group.
  • Double blind (meaning neither the patient nor the researcher will know who got what).
  • Randomized (meaning people will be randomly assigned BCG or placebo group)
  • Patients will get two doses of BCG, one month apart in the first year, and one dose per year for four years after that.
  • Primary end points (most important outcome measure):
    • A1c
    • C-peptide after a meal
  • Secondary end points (other important outcomes):
    • Targeted death of auto reactive T cells (ie. "bad" killer T cells)
    • Autoantibody levels
    • Urinary C-peptide levels
  • The trial is expected to finish collecting data in 2019, and complete in 2022. 
Here are the two key paragraphs from the clinical trials record:
The purpose of this study is to see if repeat bacillus Calmette-GuĂ©rin (BCG) vaccinations can confer a beneficial immune and metabolic effect on Type 1 diabetes. ... 
Eligible volunteers will either be vaccinated with BCG in a repeat fashion over a period of four years or receive a placebo treatment. The investigators hypothesize that each BCG vaccination will eliminate more and more of the disease causing white blood cells that could offer relief to the pancreas for increased survival and restoration of insulin secretion from the pancreas.
Discussion

There is a lot to like about this trial (as described in the paperwork).  It's much stronger than the phase-I trial.  Its size (120 people) is large for a phase-II trial for type-1 diabetes, and certainly it will run long enough to see if there is any result at all.  It's double blind and randomized, and is measuring things important both to people with type-1 and to researchers into type-1.

For me, the important numbers being gathered are the C-peptide data after a meal.  That's what the FDA looks for in type-1 drug approval, and that is the most direct measure that the treatment is helping.

But, it's going to take a very long time.  The current plan is to complete data collection in 2019, and finish the study in 2022.  That means it is reasonable to expect publication in the 2022-2023 time frame.  I specifically asked if they were going to publish interim results (for example: after one or two years), and the answer was no.  But they certainly do understand that 2022 is a long time to wait.

I'm also worried about the BCG dose they are using.  It is only very slightly different than the dose on their previous phase-I trial.  The phase-I trial (which saw only tiny results, and maybe not even that) dosed twice, a month apart.  This trial does the exact same, then waits a year, and doses once more, repeating the one dose per year for a total of four years.  They hope to see improvements after each yearly dose.  Some recent work in using BCG to treat multiple sclerosis (another autoimmune disease) gives them optimism about this dose.  But in the phase-I trial, the results after 2 doses were so tiny that even if they saw 5x that size result, it will be no where near a cure.  Still far to small.  To repeat: if the two doses a month apart did little/nothing the first time, why should they do more now?  And the additional one dose per year, seems like a small difference for large hopes.

There is another worry as well, which comes directly from Dr. Faustman's phase-I trial.  That trial (as first described in their clinical trials record) was quite different than the actual trial (as published).  The paperwork included 25 people and a standard placebo group.  However, the completed trial only involved dosing 3 people, and several different comparison groups (used for different end-point measurements).  Hopefully we will not see that kind of downsizing or design change in this clinical trial.

Other Data Relating to BCG and Type-1 Diabetes

In 2012 an article was published showing correlation between more BCG immunizations (for Tuberculosis) and a lower risk of type-1 diabetes.  I did not report it at the time, because it was not indexed in pubmed (the huge US government database of medical publications), and so I did not know about it. The paper itself is in Turkish, and so I have not been able to read it.  However, there is an English abstract, and that is the basis of this summary.

TB vaccinations with BCG leave a mark, which is usually visible for many years.  The researchers simply counted these marks for patients who had type-1 diabetes, and for a matched control group that did not.  What they found was that the people who had type-1 diabetes had fewer BCG vaccinations:

Type-1 Diabetes: 2.3% zero scars, 55.4% one scar, 37.7% two scars, and 4.6% three scars
No Diabetes:          0% zero scars, 17.7% one scar, 74.2% two scars, and 8.19% three scars.

Obviously, this supports the idea that BCG could prevent type-1 diabetes (although it does not directly support BCG as a cure for established type-1).  However, it is important to realize that at least three previous studies have reported that TB vaccinations do not impact type-1 diabetes rates:
http://cat.inist.fr/?aModele=afficheN&cpsidt=11111587
http://care.diabetesjournals.org/cgi/content/abstract/20/5/767?ijkey=de477936685fbc95cfd98bc52cb120be655acd09&keytype2=tf_ipsecsha
http://care.diabetesjournals.org/content/28/5/1204.full

None of these four studies (the three negative and the one positive) was identical to each other, and there is no way for me to tell if the positive one was a better study than the three negative ones.  In general, I think it's safest to go with either the most recent study (positive, in this case), or the largest number of studies (negative, in this case).

But that summary of studies treats all BCG trials together, assuming that all BCG used everywhere is the same.   But that's not strictly true.  BCG is a biologic, and there are different strains.   It's not a chemical were all batches are identical.  Some researchers believe that some strains of BCG will be effective in treating type-1 diabetes, while others will not.  They tend to view previous failures as caused by using the wrong brand of BCG, together with other experimental designs which minimize BCG's effectiveness.  I tend to view these arguments "backwards", meaning that if some experiments fail while other succeed, then there will be discussion of BCG strains and experimental designs.  Right now, for type-1 diabetes, there aren't any clear successes at all, so no need to discuss strains or experimental design.

Summary

My summary is simple: all we have to do is wait, and see what data comes out of Dr. Faustman's study.

More information:
Clinical Trial Record: http://clinicaltrials.gov/ct2/show/NCT02081326
Dr. Faustman's Lab: http://faustmanlab.org/
Facebook: https://www.facebook.com/FaustmanLab

Dr. Faustman's recently published book on BCG, TNF and Autoimmunity:
http://www.amazon.com/Value-BCG-TNF-Autoimmunity-ebook/dp/B00JB4ZC6I/ref=sr_1_1
(I have not read it, yet.)

Joshua Levy
http://cureresearch4type1diabetes.blogspot.com 
publicjoshualevy at gmail dot com 
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF, JDCA, or Tidepool news, views, policies or opinions. My daughter has type-1 diabetes and participates in clinical trials, which might be discussed here. My blog contains a more complete non-conflict of interest statement. Thanks to everyone who helps with the blog.

Saturday, January 5, 2013

Funding Existing Drugs

This is a blog posting which I wrote several years ago.  I think in 2009. I lost track of it, and it never got posted.  But I recently came across it while cleaning old entries.  I think it is still valuable today, so I'm posting it.  Also, it makes a nice pairing with my last blog posting on Vitamin D.

Discussion about the argument that "Treatment X can't get funded because it uses an old / cheap / generic / unpatented drug so there is no profit in it!"

One complaint that is sometimes heard about the funding of cures for type-1 diabetes, is that some treatments can not get funded because they are generic drugs, so no one will fund development. Most recently, this argument is often used by fans of BCG and LDN to explain why they have so much trouble getting funded: it's because they are generic drugs, according to this line of reasoning.

This argument has never made sense to me, and below I've included two counter arguments and one example: an argument based on data from drug trials, one based on common sense, and the example of aspirin.

Clinical Research on Old, Generic, or Cheap Drugs

Since I track only clinical trials, I thought I would take a look at how this argument ("generics / existing drugs / old drugs can't get funded") compared to the actual clinical trials that I track. It turns out that this argument simply doesn't match with reality. Several generic treatments are being funded right now, by several different organizations.

There are a total of 27 treatments that are in clinical (human) trials to cure type-1 diabetes (remember, this was in 2009). Several of these treatments involve more than one drug.  Out of the those 26 treatments, 7 use only "old drugs" or drugs that are unpatented. They are:

  • Thymoglobulin (also known as ATG) by Gitelman
  • Umbilical Cord Blood Infusion by Haller at University of Florida
  • Brod at University of Texas-Health Science Center
  • Atorvastatin (Lipitor) by Willi at Children's Hospital of Philadelphia (Generics available 2011)
  • ATG and autotransplant by Burt at University of Sao Paulo
  • GCSF by Haller at University of Florida
  • GCSF and autotransplant by Esmatjes at Hospital Clinic of Barcelon
That means that 27% of drugs currently in clincial trials are exactly the kind of old or unpatented drugs that these guys say can not get funded. It is the ultimate proof that they can get funded: they are being funded!

BCG Specifically

When Dr. Fastuman's supporters claim that she can't get funded because she is using a generic that no one will profit from, an even more specific data set is available. The drug that Dr. Faustman is currently testing is BCG. So an obvious question to ask is this: have any clinical trials of BCG been funded in the time period from about 2002-2008 (which is when she was looking for funding). If her trial could not get funded because BCG is a profitless generic, then certainly no other clinical trial of BCG could get funded, either.

But, when I look at the US Government web site (www.clinicaltrails.gov) which tracks human trials there are 15 BCG trials in progress (ie. records updated) between 2002 and 2008. I limited my count to trials that were testing BCG's effects, so I excluded trials that were comparing a newer treatment to BCG, and I also excluded all trials that used BCG and another treatment (even if that other treatment were old / cheap / generic, etc.)  Even with all those exclusions, there were 15 different clinical trials using BCG.

Think about that: at the same time Dr. Faustman's supporters are claiming that her BCG research could not get funded because it was not a patentable/big profit drug, 15 other researchers were getting funded to study that exact same drug! Obviously, the supporters are wrong about this reason why Dr. Faustman had so much trouble getting funded.

Low Dose Naltrexone (LDN)

The story was similar for LDN: there were currently five separate LDN studies recruiting patients at the same time a type-1 diabetes study had not been funded. So obviously, the economics are such that LDN research can get funding, even though it is an old drug which is no longer covered by patients. Indeed, just recently, it did get funded, even though it is still an old / cheap / unpatented drug.

The Common Sense Argument

Every drug that you can buy today, is made by some company that is making a profit off that drug. And if they sold more of it, they would make more profit. So every drug made today has a company (or many companies) behind it.  Companies that want to make more of it. It doesn't matter if it is an old drug or a new one or if it is covered by a patient or not. Sure the exact dollars are different, but the basic profit motive doesn't change. Older drugs might be lower profit, but they are also cheaper to use in experiments, and much cheaper to get approved.  Usually they are already approved for marketing!

Right now there are at least three large drug companies that make a profit by selling BCG.  And, they want to sell more.  At least one of them (SSI) does not sell any diabetes treatment equipment or supplies, so they would be particularly interested in funding Dr. Faustman's work, if it had any chance of working.

Furthermore, this whole argument is based on the idea that the only groups that fund research are profit-motivated companies. But we all know that is not true. Sure companies fund a lot of research, but so do private non-profits (not just JDRF, but DRI, ADA, JLN, etc.). Plus there are government agencies. In the US there are at least four that commonly fund diabetes cure research, and that's not counting countries all over the world which also fund diabetes research. And to push that idea even a little bit farther: many non-profits or government agencies actually prefer to fund research on unpatented drugs. It is easier to justify, and can help more people more cheaply than a patented drug. So those guys will be biased in favor of an unpatented drug, not against them.

Aspirin

As a very quick example, consider aspirin to prevent heart attack. In the 1970s, aspirin was the ultimate in old, generic, unpatentable drugs.  It has been first discovered over 100 years before, and the "modern" form was over 70 years old even then!  Yet when early research suggested a completely new use for aspirin, preventing heart attacks, there was no difficulty in running several very large studies.  Some of these studies involved thousands of people, and more than enough were done to get aspirin approved by the FDA for a new use.  Surely if research into new uses for low-profit, old, unprotected drugs could not be funded, then the research into aspirin as a heart attack preventative in the 1970s and 1980s would never have happened.

For all these reasons, whenever I hear someone say "it's a generic drug, so it can't get funded" I always think to myself "no, the reason it can't get funded, because the people who might fund it don't think it will work".

Joshua Levy
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF or JDCA news, views, policies or opinions. My blog contains a more complete non-conflict of interest statement. 
Clinical Trials Blog: http://cureresearch4type1diabetes.blogspot.com
Cured in Mice Blog: http://t1dcuredinmice.blogspot.com/

Wednesday, August 29, 2012

Summary of Dr.Faustman's Phase-I Results


This is a short summary of Dr. Faustman's research.  If you want the long, detailed version, that was yesterday's blog, and you can see it here:
http://cureresearch4type1diabetes.blogspot.com/2012/08/details-of-dr-faustmans-phase-i-results.html

Dr. Faustman has published the peer reviewed results of her phase-I clinical trial.
The trial was complex, and the results are complex, and I know there is a lot of interest in this particular research, so this post contains a quick summary of the results. 

If you want more explanation of anything I say here, please take a look at that detailed posting first.  If it doesn't answer your questions, then comment or email me.  Thanks.

I've blogged extensively on Dr. Faustman's research in the past, which you can read here:

Background to Dr. Faustman's Research

The essence of Dr. Faustman's theory on how to cure type-1 diabetes is:
  • Part 1: BCG causes the body to generate TNF
  • Part 2: TNF causes fewer autoreactive T-cells
  • Part 3: Fewer autoreactive T-cells results in beta cell regrowth and more insulin generation
  • Part 4: More insulin generation is the path to curing type-1
BCG (Bacillus Calmette–GuĂ©rin) is a biologic which has been given to over a billion people (in low dose) as a tuberculosis vaccine, and is also approved (in much higher doses) as a bladder cancer treatment.  It is a generic drug with a very long record of safety.  This trial focuses on parts 1-3 of the theory.  Part 4 is not controversial at all, and part 1 is widely believed as well, so it is parts 2 and 3 that really need testing.

TNF ("Tumor necrosis factor" or TNF-alpha) is a naturally occurring protein that can cause cells to die.  It is involved in the natural regulation of immune cells.

"Autoreactive" refers to immune cells which mistakenly attack the body's own beta cells.  The destruction of these beta cells leads to type-1 diabetes.  This is sometimes referred to as an "autoimmune attack" because the body's own immune system attacks the body itself.

Summary of Results

In this day of 10 second sound bytes and 140 character messages, everyone wants a short summary.  But this is a complex trial, and just about any quick summary will be an over simplification.   This is the best that I can do:

This trial was supposed to provide support for three parts of Dr. Faustman's theory, but:
1. It provided no data to support part 1 of Dr. Faustman's theory.
2. It provided data that part 2 was not happening (ie. it contradicted part 2 of Dr. Faustman's theory).  In particular, no change in live autoreactive T cells were reported.
3. The study shows a very small improvement to C-peptide numbers (but that was dependent on using a particular control group).  This improvement to C-peptide production supports part 3 of Dr. Faustman's theory.

Result 2 above, suggests that Dr. Faustman's theory about how BCG could help cure type one diabetes, was wrong.  But result 3 holds out a sliver of hope, that maybe in some different way BCG will be part of a cure.  Therefore, all discussions about the success or failure of this experiment are going to quickly boil down to the importance (and even existence) of the very small increase in C-peptide production in item 3 above.  This very small increase in C-peptide production was "brittle", meaning it was only seen with a particular control group.


Other important points:
4. There were no safety issues, although this was expected considering BCG's long safety history, and the fact that it was chosen specifically because it was known to be safe.
5. The improvement to C-peptide numbers, is much smaller than that seen in established type-1 diabetics enrolled in Dr. Zhao's or LCT's previously published phase-I clinical trials.
6. In this very small study, A1c numbers got worse for people given BCG.  For me, this was a worrisome effect, although the paper does not treat it as such.
7. Part of the paper described one patient who came down with Epstein Bar Virus (EBV) during the trial.  I consider that a single patient case study, not a clinical trial, so I'm not going over it in detail. If you're interested in that one patient, you should read those parts of the paper.

The Future of This Research

In one sense, the future of this research is easy to predict.  Dr. Faustman has already gathered $8 million for the follow-on phase-II trial, so I have every expectation that a follow-on clinical trial will be done.

But scientifically, the future is much more murky.   Moving this research forward is not going to be easy.  Because the current results are 100s of times too small for a cure, I don't think it is reasonable to just give "linear" higher doses or more frequent doses.  Certainly, not a dose 100s of times higher.  Often, it is the theory about why the treatment works that gives you clues about how to change doses between phase-I and phase-II.  If there is an important threshold, for example.  But in this case the theory about why the treatment works has not been supported by phase-I, so there is no help there.

Of course, research is always about the future: what can this grow into?  But if you are betting on future improvements, then it makes sense to start with a stronger base, and Dr. Zhao had much better results 6 months ago, and LCT for longer than that.

My opinion: Everyone wants to know if this clinical trial succeeded or failed.  This trial did not succeed, but did it fail?  Maybe, I would phrase it a little differently.  One way to phrase it is this: This trial succeeded in telling us that the previous theory was wrong.  Another way to phrase it is this: This trial is more indicative of a basic research result, than a path-to-product research result.  There were anomalies that might turn out to be interesting: the dead autoreactive T cells and also the change in GAD/TnT8A antibodies and regulatory T cells, but these represent basic research and there is no obvious path from these results to a cure.

Joshua Levy
All the views expressed here are those of Joshua Levy, and nothing here is official JDRF or JDCA news, views, policies or opinions. My blog contains a more complete non-conflict of interest statement.
Clinical Trials Blog: http://cureresearch4type1diabetes.blogspot.com
Cured in Mice Blog: http://t1dcuredinmice.blogspot.com/