STUDY: More Advances Are Needed for the Type 1 Diabetes Community

Endocrinologists and Adults with Type 1 Diabetes Struggle to Keep Blood Sugar within Recommended Range Yet Remain Hopeful and Optimistic About the Future of Disease Management

The American Association of Clinical Endocrinologists (AACE) today announced results of two recent online surveys, conducted by The Harris Poll that assessed the attitudes of endocrinologists and adults living with type 1 diabetes (T1D) in the United States. The T1D Unmet Needs surveys examined the support, management and treatment of the disease and why it is important to continue prioritizing and advancing innovation to help people achieve better outcomes. More than 70 percent of endocrinologists and adults with T1D surveyed stated that recent advances in T1D give them hope that there will eventually be a cure, yet an overwhelming majority agreed that more advances are currently needed to help improve the lives of those with the disease. These national surveys were supported by Lexicon Pharmaceuticals and Sanofi US.

Specifically, these findings reveal:
• While 73 percent of both endocrinologists and adults with T1D stated that recent advances in the T1D space give them hope for a cure, they still seek more; with 87 percent of those with T1D and 93 percent of endocrinologists agreeing with the sentiment that more advances are needed to improve the lives of those with T1D.
• Additional data show that nearly all endocrinologists (97%) said that their patients want options to help them better manage their disease, with 82 percent of those with T1D in agreement.

“Over the past five years, the type 1 diabetes landscape has vastly evolved. With new technology, genetic research and testing, and finger stick-free monitoring devices, it’s truly an exciting and unprecedented time in healthcare, and in diabetes in particular. However, the data from these surveys are an important reminder that there is still a lot of work to be done to meet the needs of the type 1 diabetes community,” said George Grunberger, MD, FACP, FACE, chairman at Grunberger Diabetes Institute in Bloomfield Hills, Michigan. “Physicians should ensure they are working in partnership with their patients to review new research that might address both therapeutic and disease management challenges.”

Despite Progress, People Living with T1D Still Struggle with the Impact the Disease Has on Their Lives

For those living with T1D, everyday situations that other people take for granted can be challenging and ultimately have an adverse impact on their lives. For instance, 88 percent of adults with T1D said that living with the disease adds stress to their lives and that they avoid going out to eat (57%) or attending social gatherings with family and friends (49%) because of their disease.

These challenges extend into disease management, as adults living with T1D said they struggle the most with keeping their blood sugar within recommended range (58%) and achieving individualized target A1C levels (48%). Endocrinologists agreed that these are the top things their patients struggle with. Approximately 77 percent of adults with T1D wish they had a medication to help them stay within the recommended blood sugar range for longer periods of time. Endocrinologists are not immune to the effects these challenges have on their patients as 93 percent wish there was more they could do for them.

"These findings highlight the ongoing need to provide support to adults living with type 1 diabetes,” said Rachele Berria, MD, PhD, head of US Diabetes Medical Affairs at Sanofi. “We have collaborated with AACE and Lexicon Pharmaceuticals to ensure these unmet needs are brought to the forefront in the hopes that increased awareness will help to transform care for people living with type 1 diabetes.”

Opportunities Exist to Improve Education and Cross-Share Knowledge

Almost all endocrinologists (97%) said they keep their patients informed of advances in T1D and, overall, adults with T1D and physicians were aligned in many aspects of their views of T1D. However, opportunities exist to further align as evident by some of the biggest gaps in knowledge including:

• Virtually all endocrinologists (99%) are knowledgeable about non-insulin pathways, yet less than half (45%) of those with T1D knew about them.
• Regarding other advances, one third of endocrinologists (32%) believe “artificial pancreases” have the greatest potential for positive impact on their patients with T1D but many adults living with T1D (28%) don’t know anything about that advancement.

“These findings represent an opportunity to enhance education and cross-share information about innovation that might ultimately improve type 1 diabetes care and outcomes,” said Pablo Lapuerta, MD, executive vice president and chief medical officer at Lexicon. “Lexicon and our partners at Sanofi are committed to bettering the lives of the millions of people around the world living with diabetes. We understand that living with type 1 diabetes is an everyday challenge and through our collaboration with AACE, we hope to call attention to the unresolved needs of the type 1 diabetes community, specifically.”

For more information on the challenges faced by people living with T1D, please visit gobeyondinsulinalonet1d.com.

Original Press Releases HERE!

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Logically, the recent ‘advances’ in diabetes treatment, in terms of all the new and expensive gadgets for controlling blood sugar, should make people involved with the disease despair of a cure, since there is now too much profit in perpetuating the disease for Big Pharma ever to develop any serious interest in killing the goose that lays its golden eggs.

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I’m glad to see more focus on time in range & BG variability instead of viewing A1c as the only measurement tool.

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Ironically, all this official blather about keeping diabetes treatment current with the latest advances ignores the most important and revolutionary recent discovery, discussed elsewhere on this message board, which is that all-cause mortality for type 1 diabetics rises if the average A1c falls below 7%, just as was discovered back in 2008 for type 2 diabetics. Logically this should revise the strict blood sugar control recommendation, but given the inertia of the medical community, the idea has not penetrated yet. I suspect the slow up-take might also have to do with the discipline masters not wanting to give up their whip.

Is this based ona single study? I don’t think any conclusions should be reached nor medical recommendations changed based on the results of a single study. Especially given that a majority of people with T1D aren’t meeting an A1c target of 7% to begin with.

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You can follow the long discussion about this topic elsewhere on this forum. Since it seemed obvious ever since the extensively confirmed finding in 2008 that all-cause mortality for type 2 diabetics was increased by lowering average A1c values below 7% that the same result should be found to hold for the other group receiving insulin therapy for hyperglycemia, type 1 diabetics, the recent empirical confirmation of that natural logical inference seems fairly reliable.

I’d like to read this study, if I haven’t already. Which study are you referring to?

Also, do you have a link to the discussion about this topic on this forum? I did look, but I didn’t find anything that was long. I’d like to read more.

Thanks!

I do think it might be a little short sighted to think that all the companout there are all in on keeping us diabetic forever. I have worked with many very passionate people working in the research field. Nothing they want more than to cure this epidemic disease. And while for the past 47 years I have been listening to the cure in 5 years line, I now realize after being in some trials, that it is a lot more complicated. And if they can come up with something that can make my life easier and more “normal “, I can’t wait. I am one of those that is eagerly waiting for the iLet pump to hit the market. Just think, I can be like the next person and not have to the math gymnastics before I eat something. Just tell the pump what size the meal might be and go. And if it doesn’t hit it right, guess what, it will do the thinking for me and change the basal to bring things back in line. I can’t wait. It literally puts a smile on my face every time I think about it!

I do think the numbers that were discussed in this article are higher than I thought. After reading so many peoples stories about how their endos won’t talk about new treatment plans, this numbers of endos knowing about all the options seems high. I know I am blessed to live in an area where research is happening at multiple locations. So I do get into some cutting edge trials. But I will say, I hope we can all find that endo who knows what is happening and how this treatment plan might work for each person. A great doctor is one who realizes that what works for one, won’t work for the next. Or what works for one person today, might not work next month.
I hope these kind of articles will help us think forward and think about how good it can get. I know I sure don’t want to go back to test tubes, eye droppers and tablets! I have taken each new advancement to help me stay happy and healthy. I really do feel that I am in better than many in my same age group!

Here is an abstract of the article:

Glycemic Control and All-Cause Mortality Risk in Type 1 Diabetes Patients: The EURODIAB Prospective Complications Study
Danielle A. J. M. Schoenaker, Dominique Simon, Nish Chaturvedi, John H. Fuller, Sabita S. Soedamah-Muthu, and the EURODIAB Prospective Complications Study Group
School of Population Health (D.A.J.M.S.), University of Queensland, Brisbane, 4006 Queensland, Australia; Department of Diabetes, la PitiĂŠ Hospital and University Pierre et Marie Curie, 75013 Paris, France; INSERM CESP (D.S.), U-1018, 94805 Villejuif, France; National Heart and Lung Institute (N.C.), Imperial College London, London W2 1PG, United Kingdom; Department of Epidemiology and Public Health (J.H.F.), University College London, London WC1E 6BT, United Kingdom; and Division of Human Nutrition (S.S.S.-M.), Wageningen University, 6700 EV Wageningen, The Netherlands

Context: Glycemictargetsandthebenefitofintensiveglucosecontrolarecurrentlyunderdebate because intensive glycemic control has been suggested to have negative effects on mortality risk in type 2 diabetes patients.
Objective: We examined the association between glycated hemoglobin (HbA1c) and all-cause mortality in patients with type 1 diabetes mellitus.
Design, Setting, and Patients: A clinic-based prospective cohort study was performed in 2764 European patients with type 1 diabetes aged 15–60 years enrolled in the EURODIAB Prospective Complications Study.
OutcomeMeasure:PossiblenonlinearityoftheassociationbetweenHbA1candall-causemortality was examined using multivariable restricted cubic spline regression using three (at HbA1c 5.6%, 8.1%, and 11.8%) and five knots (additionally at HbA1c 7.1% and 9.5%). Mortality data were collected approximately 7 years after baseline examination.
Results: HbA1c was related to all-cause mortality in a nonlinear manner after adjustment for age and sex. All-cause mortality risk was increased at both low (5.6%) and high (11.8%) HbA1c comparedwiththereference(medianHbA1c:8.1%)followingaU-shapedassociation[Poveralleffect .008 and .04, P nonlinearity .03 and .11 (three and five knots, respectively)].
Conclusions: Results from our study in type 1 diabetes patients suggest that target HbA1c below acertainthresholdmaynotbeappropriateinthispopulation.WerecognizethattheselowHbA1clevels mayberelatedtoanemia,renalinsufficiency,infection,orotherfactorsnotavailableinourdatabase. If our data are confirmed, the potential mechanisms underlying this increased mortality risk among those with low HbA1c will need further study. (J Clin Endocrinol Metab 99: 800–807, 2014)

https://academic.oup.com/jcem/article/99/3/800/2537570

In conclusion, results from our study suggest an elevated mortality risk at both low and high HbA1c in type 1 diabetes patients. The higher risk of all-cause mortality at lower HbA1c levels found in our study might indicate that target HbA1c levels below a certain threshold may not be appropriate for all type 1 diabetes patients. We recognize that HbA1c levels below 5.6% in individuals with type 1 diabetes may be related to anemia, renal insufficiency, infection, or other factors not available in our database. Findings on this relationship from observational and intervention studies among type 1 and 2 diabetes patients are inconsistent, and our data will require confirmation by other groups. If confirmed, the potential mechanisms underlying this increased mortality risk among those with low HbA1c will need further study.

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Thank you, @Seydlitz for posting the study. Is this the only one on the subject, in regards to T1D, that you’re aware of? It was published more than four years ago. I’m just wondering if / why there isn’t more recent research on this.

I went to reply to this thread earlier on, but canceled it because I rambled on too much. I had written about being concerned, reading what you had written, because I had worked very hard since diagnosis to get and keep my HbA1c in the normal range (4s and 5s with some 6s), sans a period of poor absorption (8s). Dr. Bernstein, well, he says we all deserve and can attain normal blood sugars and I believe him.

I’m thinking if this is the only study (thanks so much @katers87 for posting the actual link) perhaps there isn’t much too it, especially taking into consideration the text katers87 bolded, “Findings on this relationship from observational and intervention studies among type 1 and 2 diabetes patients are inconsistent, and our data will require confirmation by other groups.”

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Even if this study is accurate here in the UK the leading cause of lower limb amputation and second leading cause of adult onset blindness is dabetes. I would prefer to live a shorter life than a longer one blind and legless.

I had to google “non-insulin pathways”. I had never heard that before. Most of the google hits, just went back to this poll. I found a website “gobeyondinsulinalonet1d.com” and visited it but learned almost nothing.

I strongly suspect the poll and the website are examples of “push polling”.

Would Symlin be an example of a non-insulin pathway?

If you scroll about 3/4 of the page down, they list what they define as non-insulin pathways:

Sodium Glucose Transporters (SGLT-1 and SGLT-2)
Glucagon
and Glucagon-Like Peptide-1 (GLP-1)

I’ve never really considered factoring these into my care, but I have heard of the first and last being somehow used in the treatment of type 2. Not sure if that’s what they’re getting at.

There are some here who have talked about “mini-doses” of glucagon to raise slightly low bg’s without having to eat.

That is, instead of the full-dose emergency use. I’ve had full-dose glucagon once in the past 40 years and it left me super-duper nauseous for a whole day afterwards. I’ve also had IV glucose in the ER as a response to a hypo. I far and away preferred the glucose over the the glucagon!

I’ve also read about the mini-glucagon doses. I could see it being useful when you’re sick or otherwise can’t ingest food/glucose, but until glucagon can be stored in a stable, less expensive form I don’t see how it could be used regularly.

I think a non-D person’s liver puts out glucagon whenever their insulin (and glucose) are too low, and it signals glucose output from the liver. I’m sure these are small small doses though, so maybe that’s why it doesn’t make non-D people feel crappy.

I’d be pretty interested in using a product that gave both insulin and glucagon, but I’m not sure insulin will ever work fast enough for that to be practical.

I think the European study showing an increase in all-cause mortality among type 1 diabetics if they fell below an A1c value of 7% (and also if they rose above 10%, yielding a statistical distribution looking like a ‘smile’ on the graph) is statistically extremely strong, since it covered 2764 patients over 7 years, for a total of around 19,000 patient-years of information. In contrast, many diabetes studies will be of 100 patients or so followed over a year, so you see how much stronger the statistical power of the present study is.

Also, since it parallels the already well-confirmed result in type 2 diabetics, established, challenged, and retested numerous times, starting in 2008, that all-cause mortality rises as well for type 2 diabetics achieving an A1c below 7%, this further strengthens the result for type 1 patients. It just doesn’t seem logical that two groups of patients being treated for hyperglycemia should have different outcomes from passing below a given extreme of blood sugar reduction, especially given all that has been discovered recently about the similarity between type 1 and type 2 diabetes, from their similar genetic backgrounds to the role of autoimmunity in both diseases.

While diabetic complications are associated with hyperglycemia, there are other important causes of complications in diabetes, including genes that induce the formation of certain complications, especially diabetic kidney disease, and the continuing autoimmune attack on the body that induces other complications, especially diabetic nerve disease. Normalizing blood sugar is not the way to address all the problems of the disease.

Still, of course, it seems strange that diabetics seem to be harmed by blood sugar values which are normal for most people, but it’s important to keep in mind that they are genetically different from most people. Also, there are other diseases, such a nephropathic anemia, which if treated to bring the patient back to normal levels will increase the risk of cancer and stroke, largely because the artificial way this has to be done (i.e., the drug used), have deleterious side-effects. Something similar may be going on in diabetes, where the failure of injected insulin correctly to mimic the action of beta cell delivered insulin causes physiological problems.

But correlation doesn’t equate to causation. Just because people with an A1c of 7%-10% show the best outcomes doesn’t mean it’s because of that A1c. Maybe it’s become of something else, like hypoglycaemia, stress level, genetic factors, dietary choices… A lot more research needs to be done, in my opinion, before any recommendations are changed. And that’s not even addressing the fact that a majority (maybe even a vast majority) of people with T1D actually have an A1c within the 7%-10% range today.

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I chose this post to reply to since it mentions time in range. I aim for non-diabetic lab values (knda have to, I was born with poor kidney fnction) Anyway, We have to remember that the A1C is just an average. Let’s say the goal is an A1C of 5. If you spend time with bg’s that are “5”, “5” and 5" then your A1C is 5. But you would also have an A1c of 5 if your bg’s ran “0” 5"5 and “10”.

That’s where CGM comes in so well, it gives the PWD and their healthcare provide views of what is going on throughout the time period, if it is a definite pattern than things go south at certain times of the day, treatment can be adapted. Or, if it isn’t so “scheduled” that making use of temp basals etc can work well to keep in range and quick recovery.

I am presently “fighting” because as a person who is over 65 with a T1 history of 40+ years, the Endo practice I have to use wants me at 7.5 A1C. That would lead me straight to dialysis - and I ain’t goin’ there!

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I agree with you, though I’m not at all convinced that this study can be used as evidence that having a lower A1c increases mortality risk.

If you look at Table 1, it clearly shows that the lowest quintile has the lowest incidences of neuropathy, nephropathy, and retinopathy. The only complication for which the lowest quintile has a (relatively) high incidence is cardiovascular disease.

It’s worth noting that, at baseline, the rates of cardiovascular disease are lower than the rates of every other complication (except severe nephropathy for the first and second quintile only, and the rates of severe nephropathy are very low for those quintiles).

It’s also worth reading the following paragraph regarding deaths in all quintiles:

"Participants who died during follow-up were older; had higher HbA1c, systolic BP, triacylglycerol, and total to HDL cholesterol ratio; and had longer diabetes duration. They were also more likely to be male, physically inactive or ever-smoker, use antihypertensive medication, and had CVD or microvascular complications at baseline (Table 2)."

The fact that participants that died had a higher HbA1c makes the whole conclusion very confusing… these people had a higher HbA1c when they died… not necessarily at the arbitrary baseline 7 years before. It all seems a bit silly to be using the arbitrary baseline value to conclude anything. It’s only one A1c value…

They state many reasons in the study why the results would need to be replicated. There are so many influencing factors.

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