Why is Progress Toward a Cure for Type 1 Diabetes So Slow?

When I was first diagnosed with diabetes, the Harvard Professor of Endocrinology who was teaching my class on managing diabetes for new patients at the Joslin Clinic in Boston commented that the disease “was long overdue for a cure.” Unfortunately, that was 1966, and we still have no cure, and now the usual propaganda about a cure becoming available in “five to ten years” has changed to twenty-five years and more. Why has progress been so slow?

In part this is because of the general stagnation in medical progress in recent years, with the last major disease having been overcome in 1954, when the polio vaccine was discovered. Many respected commentators have discussed this slow-down, including Eileen Crimmins and Hiram Beltran-Sanchez, Tyler Cowen, James Le Fanu, Megan McArdle, and James Vaupel. The slowing of new drugs submitted for FDA approval for the first time ever in 2008 is a measure of this stagnation. This may be part of a wider phenomenon noted by Michael Hanlon, which is that scientific and technical progress are generally slowing in all fields of science, such that an 80-year-old in 1960 would have seen the invention of cars, telephones, televisions, radios, movies, antibiotics, x-rays, satellites, rockets, jets, radar, cures for tuberculosis, numerous vaccines, and endocrine deficiency supplement treatments, an 80-year-old in 2010 would only additionally seen the development of space travel, cellphones, computers, and the internet.

One way to explain this is to note that the low-hanging fruit is easiest to pick, and the problems of further development at the frontier of knowledge may take a lot more investment of time and money to solve.

Another problem is that medicine is glacially slow in its progress, partially because it is not just a science but also a professional, and professionals can only enforce the boundary against non-professionals if they maintain a firm commitment to existing knowledge and resist innovation. It is also hesitant and conservative in its reasoning and inference, in a way which would be shocking in other fields, such as physics, where a single key experiment can change an entire explanatory paradigm and start a revolution in thinking, while the first instinct of medical researchers when confronted by a novel theory or datum is always to try to explain it away as based on a flawed study or as too new for people to trust it. I tried, for example, for a paper for a history of medicine course I was taking, to trace the development of theory in an area of medicine over the previous 40 years, and I found I could hardly tell whether I was reading a journal article from 1980 or from 2010, since medical researchers had just been chewing over the same old ideas without an inch of progress in all those years.

The slowness of progress in type 1 diabetes might be due to limited financial returns for finding a cure, since any pharmaceutical company also raking in the profits from massively overprices diabetes management tools would have to discount the value of any cure by the loss in selling these accessories for an incurable disease. A lot of time and money are wasted, at least from the perspective of people with existing cases of diabetes, by the considerable research effort devoted to preventing the onset of type 1 diabetes rather than curing it. Considerable research energies are consumed by efforts to improve management tools rather than to find a cure. Many efforts are wasted on utterly dead avenues of research, which the briefest initial consideration would reveal as pointless, such as searching for cures for type 1 diabetes which involve taking immunosuppressive drugs whose side-effects are worse than uncontrolled diabetes, so what is the point even if they work? Public support for type 1 diabetes research is undermined by the general public assumption that if all diabetics would only get off the couch and stop eating so much, the disease would go away. Many diabetes cure organizations spend massive amounts of money on executive salaries (e. g., one CEO earns more than $800,000 a year), as well as on administrative costs and advertising, leaving only a tiny fraction of contribution funds available for cure research. The amount of money society spends on addressing the problem of diabetes is also miniscule compared to the financial and human costs of the disease. Finally, I can’t count the number of times I have read medical journal articles having absolutely nothing to do with a cure for the disease, and having a title like “Fingernail Growth as a Function of Uric Acid Levels in Newly-Diagnosed Diabetics,” and then at the end they acknowledge that the research in the article was funded by one of the many groups with a clear purpose of curing diabetes in their title!

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Researchers are studying celiac disease because it is the only Autoimmune disease that has a known trigger – gluten. If they can determine what turns on the genes for celiac disease, they can hopefully determine the same for TD1 and other Issues. Learn more from this article:

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I think they have no real idea for sure of what triggers it or the mechanism of it in each person. There could be multiple factors. Even if they do it prolly won’t help those of us who have it already. I think the best we can hope for are better treatments that allow a more normal life. Such as beta cell implantation etc. don’t worry the “cure” will be outrageously expensive too I’m sure. I do think the fincancial motivation plays a role as well. I’m not sure how much is actually spent on research for type 1?

I believe now gluten and grains played a role in my type 1 causing damage to my digestive tract.

Sey - with “Type 1” you have two issues. The first is stopping the auto-immune attack. The second is restoring beta cells once the attack is stopped. Years ago Al Mann demonstrated increased insulin sensitivity and a stopping of the progression is very doable when the attack is not active. We are seeing the same in Dr. Ralph DeFronzo current Qatar study.

Since we do a terrible job today keeping people in a non-diabetic range, T1s who are not currently under attack have little chance for their beta cells to regenerate.

To solve the underlying issue or issues of why there was an auto-immune attack is going to take another Al Mann willing to spend their own money and he spent $1B+ on afrezza. I am sorry to say guys like Al Mann don’t come around often. Diabetes is a huge business. If you solved the auto-immune attack and then followed what Al outlines in the video below you would kill a $100+billion dollar market. Your $800k CEO who is probably getting $5M in stock options and bonus would probably be out of a job. What big pharma wants that to happen? How about the endo’s and cardiologists? How much heart disease is due to high blood sugar? Not to sound negative but they have been doing everything they can to kill Al’s afrezza and continue to do so.

As I said Al was one of the great minds in diabetes. What they saw in their testing was beta cell regeneration by keeping tight range 70-140. He starts talking diabetes
at 8:30m but it gets interesting at 11:00m and then talks about stopping T2 progression at 15:00M “interesting this lowers insulin resistance… this is even likely to slow and even stop the progression of Type 2 diabetes” www.youtube.com/watch?v=SvZxYmYPXYQ

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I believe that progress towards a cure for T1D is slow because it’s a hard problem to solve. I’ve only followed this with “skin in the game interest” since 1984. Most of the progress I’ve witnessed has been in treatment modes – and that progress has been significant. The progress with fingerstick meters, CGMs, and faster insulin have all made my life better.

Many people criticized the JDRF in past years for spending too much on cure research with little to show for progress. They wanted the JDRF to recognize that many of us were aging and treatment improvements would help us whereas small steps toward an ultimate cure were unlikely to improve our lives at all.

The JDRF played an important role in pushing forward the access (read: insurance coverage) to the CGM technology in the first decade of this century. Key JDRF studies concluded in 2009 led to my insurance company covering the CGM – and it changed my life for the better!

I truly think that the cure for T1D will be found after I’m gone and I don’t think it will be slowed down for even one minute due to financial interests in the status quo. People doing this research are not simply motivated by money. The prestige involved with finding a cure will motivate this breakthrough. It will be a discovery of historical proportions and will dwarf the discovery of insulin, no small achievment. I don’t think it will happen in my lifetime but I do think it’s coming – providing we don’t blow up the planet first!

Who could have imagined this Night Scout dashboard display in 1984? This display tracks the status of my closed loop insulin dosing system. It is not commercial and is only available due to the altruism of citizen hackers.

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Thank you Seydlitz, for your great analysis about why there still is no cure for T1D. I totally agree with you. I think Terry4 is right by saying that T1D is a hard problem to solve. I would also like to add another perspective, public relations.

Most of the people I meet have a limited understanding of T1D. They usually say something like “well, it isn’t too bad really, is it?” One time I replied to someone: “It’s how you look at it, if I don’t take my medicine, I’ll be very ill tonight and probably dead by tomorrow!” The amazing thing is that I hadn’t even looked at T1D from that standpoint myself! And that’s where the public relations bit comes in. I think T1D is a PR-disaster, not because of the people with T1D, but because of the nature of the disease and the current treatment.

  1. T1D isn’t equated with death, like “cancer” is (for many people), so the prestige of finding a cure isn’t as great as finding a “cure for cancer”
  2. Cancer is really a catch-all disease, but it does have the same pathology in common, unchecked cellgrowth, which makes it easier to do fundamental research on
  3. All the types of diabetes are classified by their shared symptom: high bloodglucose, but the pathology is different in all types of diabetes, so fundamental research in one type of diabetes doesn’t necessarily apply to the other types
  4. When looking at HIV as another example, huge progress has been made in relatively short time and I would argue that it helped that HIV became endemic in gay men, because the gay community already had a lot of experience in public relations
  5. Diabetes type 1 wouldn’t have been such a PR-disaster if it wasn’t called diabetes mellitus in the first place, but something like Banting-Best disease, because most people who write/talk about diabetes don’t distinguish between the different types of diabetes. T2D is a public relations disaster in itself, so it would certainly help T1D to not be associated with T2D.

I think the cure for T1D will actually come from cancer research (!). For some types of cancer the immunesystem is used to target specific cancercells. This therapy will be useful to target the immunecells that are actually destroying betacells in patients with type 1 diabetes. Also there is a relatively new type of drugs to treat cancer, protein kinase inhibitors, which also have a lot of potential.

If it was up to me, I would establish a variable cohort study of people with T1D, who are known to have a terminal illness. With their consent it would be ethically responsible to try harsher drugs on them than you would usually give to people with T1D, to try and find a cure for T1D. Most researchers and ethical committees would not want to expose people with T1D to those drugs, because T1D is considered “not too bad really”.
That’s the reason why experimental treatments for end-stage cancer are much more common in cancer, than in T1D and treatments like immuno targeted therapy are advancing in cancer, but not in T1D.

The discovery of insulin may have kept us, people with T1D alive, but sometimes it crosses my mind that I wouldn’t have minded dying at the age of 10, because living with T1D is not great at all and when you’re dead you don’t miss living.

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I was going to post, but as usual @Terry4 I find myself 100% in agreement with you!. Some people will always look for conspiracies. IMO, it’s just a tough problem to solve.

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For that matter, how come I don’t have a flying car or jetpants?

Or how come I have to pay for electricity each month instead of having a commercially viable nuclear fusion reactor in the shed out back?

The future wasn’t all it was cracked up to be.

At same time I know of sci-fi books published just 20 years ago where the richest families on a hypothetical future planet have not just one but maybe even two comconsoles in the house with a complete library on discs. Nobody saw the cellphone and google and wikipedia coming.

It was actually very controversial at JDRF when they went from exclusively focusing only on a cure, to actually supporting treatment and living long lives succesfully as well. And that shift only happened a couple years ago.

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just my opinion, but any belief that there is a resistance to finding a cure for monetary reasons I think holds no water. Simply because you cannot know what monetary generation a “cure” will in of itself produce. It is the same with cancer… there are so many therapies for the vast array of different cancers. But let’s be realistic, as soon as cancer or T1D is cured, there will be other issues that need curing! Or, the cure itself will be the monetary replacement! what is the cure for HepC now? It exists, but quite pricey, no? I just think the “a bird in the hand argument” isn’t a good one, when it comes to curing disease. I agree there is a lot of roadblocks with the branding of T1D and with resource allocation, but as previously mentioned, it is a hard problem to solve. Is there even clear consensus on the cause? nope.

And again only IMO, the real answer will be found in genomics. There must exist a special situation in all of T1Ds DNA that allows for the destruction of beta cells. Find this, and CRISPR/Cas 9 will fix it! Even more so - identify it in the unborn, and fix it before it happens.

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I’ll put a different oar in the water on this one. I don’t think there is a massive Pharma conspiracy against diabetes cures, and I don’t think it’s just a matter of public interest or funding. The fundamental issue is that we (I’m speaking as a biological scientist here) don’t really understand complex biological systems in enough detail to cure almost any kind of disease, but especially those in which the underlying mechanism involves genetic susceptibility or cause.

The last great round of “cures” you reference came about because of the concept of vaccination, and those aren’t actually cures either. Vaccinations are fundamentally prophylactic in nature, and they don’t offer 1-treatment universal resistance, either. With enough diligence (Smallpox), a disease can be wiped out at the population level, but even polio still persists in at least two countries (and likely a few more) now. And if someone does contract Polio, the vaccine doesn’t cure them. We don’t have cures for Poliomyelitis or Smallpox vaccines (or a host of other viruses). And what I would consider the last great discovery firmly in the “cure” category, the antibiotic medications and substances, are now turning out to have some pretty awful side-effects, at least in the way we’ve implemented them in modern medical practice.

As for diabetes (of any type except physically-induced T1 or strictly genetic MODY and MIDD), all the evidence so far points to both genetic and environmental factors. And, unfortunately, it’s not the “environmental factors” side which is the most important in terms of finding a cure. Understanding the viruses or stress events or inflammation that trigger Type 1 onset, even if that is developed soon, doesn’t get us closer to a cure for a very simple reason: we don’t currently have any good, reliable way to actually alter gene expression in a living person without doing enormous amounts of non-target damage. So even if we did understand all the genes implicated in all the sub-varieties of T1, we don’t even have a class of actual medications that can target the underlying issue (unlike with antibiotics): gene therapy is speculative and exciting, but nowhere near a reality at this point in any kind of practical way.

Research into the viral and environmental triggers might help us with population-level prophylaxis (as with Polio). That is certainly where the Type 2 research has gone: we can’t cure that either, but we can make suggestions at the population level on exercise and diet standards that can protect some of those people who have the genes that predispose towards Type 2. MODY, MIDD, and the strictly genetic diabetes are a whole different kettle of fish: again, these don’t have environmental triggers, so prevention isn’t possible; but we don’t have gene therapy treatments to treat the underlying disorder (which would require changing actual genetic sequences on the fly).

Back to Type 1: I think the best we can realistically hope for, given the kinds of medical science and treatments we currently have, is that we can develop very effective treatments for diabetes. Hopefully, we can get to some point where a combination of medication and technology means we can help our bodies to self-regulate insulin and other hormones so that we aren’t constantly having to sugar-surf (because, fundamentally, we all surf sugars for a living at this point). But I don’t think we’ll have a pill or a course of treatment involving a limited amount of time that will somehow “fix” our bodies so that beta-cells regenerate, autoimmune attacks stop completely, and we happily revert to being “non diabetic.”


tl;dr: Medical science lacks the ability to cure almost any disease, in reality (other than non-resistant bacterial diseases). We have gotten quite good at prevention and treatment, and I suspect given the nature of Type 1 that this is the best we can expect anytime in the near future. To have a cure for T1, T2, or even MODY/MIDD, we have to have two things which we don’t currently have: a precise understanding of which genes are involved in the disease and why expression causes the disease; a type of treatment which can change gene expression in a targeted manner in patients without causing catastrophic effects on other systems. Currently, we have neither the genetic understanding or gene therapies that can “fix” the underlying problem. Sadly, this means no cure. At all, or at least not in any reasonable time frame (hundreds of years at our current rate of progress).

That’s just my opinion as someone who does research in biology (but is not a medical doctor or pharmaceutical researcher). And I hope I’m wrong, but I’m with Terry on this one: for now, we’d be much better off focusing on better treatments for all types of diabetes and on ways to reduce onset and effects of complications. As for the “technology can do anything imagined by science fiction” argument…while we certainly do have high-capacity computers, we don’t have flying cars, faster than light travel, or the ability to choose offspring traits from a touchscreen device. We probably will have flying cars (or something similar) at some point, although I suspect they won’t be common (for air-traffic control reasons), but we aren’t likely to ever have FTL or “Choose-a-Spawn” technology: there are things we won’t have the ability to change even with knowledge and technology, and I fear genetic expression _in a living organism_is one of them.

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Even though it is truly a hard problem to solve, I definitely don’t think that is all there is to it. Money definitely has a play in it. If it didn’t then there would be more money being spent on finding a cure. But that’s just it; it will take a great deal of money to do the research and development to find a cure, and the return on investment in finding a cure is going to be much smaller than just coming up with newer treatment options. In order for the cure to be worth pursuing for the companies who have the resources to actually develop a cure, it would have to bring in more money than what they would get for a lifetime of treatments, and also pay back the costs of research. That would make the cure un-affordable for most people, and therefore they wouldn’t make their money back. While there are plenty of researchers and scientist and doctors who truly care about the greater good above all, the big healthcare businesses are not some benign entities who just wants to help people; they are in it to make as much money as possible, and that means preventing competition as much as they can. All it takes is some lobbying of congress to make it harder on someone to work on a promising avenue for a cure, or to prevent competition from people creating cheaper and better treatments.

Even is we accept there may be no practical cure, and we resign to focusing on treatments, the issues are still much the same. Do you think Eli Lilly and Novo Nordisk will stand idly by while someone starts producing cheap alternatives to their insulins? Definitely not, since after all it is already known that the insulin companies collude together to set artificially high prices. Do you think Medtronic will sit back and watch someone bring to market a fully automated true artificial pancreas system that is cheap enough to compete with their products, maybe even cheaper, with no hurdles to jump over? I highly doubt it. If you consider how quickly technology progresses in other areas, treatment options should be much more advanced than what they are, but there is little reason for innovating quickly when you can sell the same products for 5 years, or even 20 years in the case of things like insulin, for the same price or more. it’s been about 20 years from when i was diagnosed, only just now have there been any new faster acting insulin options, and in terms of the function of insulin pumps and related products, pumps work pretty much the same and there is little to no innovation with infusion sets. The most innovation I have seen is with CGMs, and a slight innovation with the newest Medtronic stuff (though in 20 years I would expect a lot more).

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Well, “faster insulins” is a matter of perspective. I’ve been at this for 33 years and I’ve witnessed faster insulin formulations arriving on the scene. In 1996 the first rapid acting analog insulin, Humalog, became available to us. It was a lot faster in onset, peak, and duration than the Regular insulin I used before. If your diagnosis occurred after '96, then you’re right that there have been no improvement for faster insulins until recently with the introduction of Fiasp. The major exception to this was the arrival of Afrezza in 2015.

There have been improvements in the long acting formulations in the last 20 years with the introduction of Lantus, Levemir, and more recently, Tresiba.

Because there is so much money to be made by corporations in managing the disease. A cure would kill their cash cows.

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Yes, it has been slow and never ending, hearing diabetes has been cured in mice! How I wish sometimes I was a mouse!
Over the past 5-6 years, I have finally decided if I want a cure, I should start helping. So I have been volunteering for every clinical trial I can get into to. Some have been drug, some have been easy meter testing, some have been pump or infusion set testing but the biggest and longest has been my current one, which is the Viacyte stem cell trial.
I think people need to realize how long and hard these trials are. First finding people for he trial is so very hard. The criteria is very pin point and if you miss on one of the, you don’t qualify. And for some the better your control, the less likely you get in. Main reason is they want higher start numbers to show how great the results are. If you start at a 6.0 and go to a 5.9 not a lot of improvement. But if you go from a 8.0 to a 7.1, wow, the drug really works.
Than you have the mounds and mounds of paperwork. And I do mean paperwork where the patient logs everything and than someone else logs it, and than someone else reviews before submitting to FDA and than multiple people at the FDA reviews. Never ending paperwork.
And if one person reports something different, that means more paperwork and more time and more testing. So the study I’m in, if one person reports pain at device site, that becomes a huge issue, even if the other 10 didn’t report that. Main reason for the slow movement and concern, is you would be pretty upset it something went to market and all the risks and side effects were not address.
This study is a 2 years process. 2 years! And than because it didn’t work as planned, guess what?! Back to the drawing board to try something different. Than back to the FDA with new device and it starts all over again.
I understand her frustration. I heard cure in 5 years back in 1970 and I am still waiting. But I do think with all the studies with HIV and autoimmune diseases, something will happen for us PWD. Might not be in my lifetime but it will happen. The disease is just way more complicated than it should be. But what we know now about the disease vs what we knew back in 1970. Wow, we really have come a long way.
So if my next trial is an AP trial not stem cell, that’s very cool, because if there is a way to make our life’s easier, I’m all in.
No conspiracies, no big pharma, just a very complicated disease and FDA procedures that take time.

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I am really happy for all those mice, but I am a man!

I was surprised to hear that researchers believe they will cure Type 1 first. While I’ve only been a Type 1 for a little over eight years, I have heard the “in ten years” prediction since grade school (my brother was diagnosed when I was in first grade). I don’t think there is a conspiracy against finding a cure, but when it comes to believing it’s close I am definitely a Missourian (SHOW ME). As people who have to treat this every day, it doesn’t make sense to get overly excited.

I REALLY hope they develop a gene therapy cure FIRST to prevent the development of Type 1 (especially for kids). I would gladly spend the rest of my life doing this if we could stop kids from developing it in the first place. I am freaking sick of seeing kids having to deal with this!

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If the two recent comments regarding conspiracy theories were directed at me let me make something perfectly clear. I was referring to companies making wise business decisions to maximize their profits. That is not a conspiracy. That’s good business.

I have found now that I am 65 years old, I qualify for very few trials. And most of those are for Type 2’s.

I also have been frozen out of Trials in the past due to my age.

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Diabetes researchers always complain that the disease is always turning out to be more complex than they anticipated, but nothing says that because a problem is complex, a simple solution cannot be found for it. When Alexander the Great was confronted by the Gordion Knot, a knot so complex that no one had ever been able to untie it, he simply cut it with his sword, and the problem was solved. The same thing can be true of diabetes. If you try to come to grips with determining its full genetic background and all the potential environmental triggers, you’re going to have a huge difficulty with curing it, especially since genetic modification has serious problems as a treatment.

But what if we forget about addressing the disease in terms of its root causes, and instead just solve the problem of hyperglycemia by implanting encapsulated islets (animal or human) in the patient? These will respond to blood sugar fluctuations naturally, releasing as much or as little insulin as needed; they will block the ingression of the both ordinary immunity and autoimmune attacks; and the patient can go on with his life with no problems – at least if we assume that the sole cause of complications is hyperglycemia. This potential treatment has already been developed and tested, and the only remaining difficulty (now that immunologically invisible capsules have been perfected), is getting enough oxygen into the capsules to keep the beta cells alive long term, which is really just a simple problem of bio-medical engineering, not a vast problem in fundamental biology such as altering the genes, the immune system, and shielding the patient from the endless array of potential environmental triggers.

Privately funded medical research is also extremely inefficient, since it depends on some corporation deciding that it can make a profit from a product which usually takes 16 years of testing to develop, if the FDA does not fast-track it, plus billions of dollars investment to satisfy all the safety and effectiveness standards, as well as to find the drug in the first place. Government should really lead the search for a cure, since what you find now are countless promising results published in a journal articles but then there is no follow-through, because the money does not rationally pursue the options it should, especially when there’s a mint of profits to be made in improving yet another device to pump in insulin rather than inject it in, as though that would make all the difference.