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

This is indeed a hard thing for them to get a Cure!!
But just how hard is it? Are we have researched every whare? Just now I have been waiting to see the outcome of the SGLT(sodium–glucose cotransporters 1 and 2) OK what about this then?
We know that DKA is very bad for us so they have found a way to eliviate this problem as it may allow us to loose weight.
As insulin users, we gain weight as we control BG’s with this so we gain weight, the SGLT’s may help us to lower the insulin dose hence to loose weight.
For a very long time that we have looked at the Pancreas to regenerate as today we looking at the Immune system, So i dare say a new pill for T1’s so there’s hope for us just yet.
But I will end with this quote, this new pill may not cure us, but this may lead us to longer lives.

It’s been 20 years or so that we’ve been hearing about encapsulated islets as the way to manage diabetes, but also, more problematic to realize than it may sound. But I do have high hopes for this treatment strategy.
I think finding a better treatment for T1D will be here faster than finding a way to prevent T1D. It’s very likely that there are many causal pathways to the end product called T1D, and it’s also very likely that it’s also based on some genetic advantage, like the immune system being better at fighting off infections.
Knowledge about genetic associations and diseases hasn’t been able to cure any disease yet (only the opportunity to make the decision to end a pregnancy when a certain abnormality is looked for and found).

Me too, Timbeak48. I’m an adult and can deal with this, but it breaks my heart when I think of kiddos going through this and other diseases. Prevention should be first.

1 Like

I’m definitely in the “no kind of diabetes is going to be cured in our lifetimes” camp (downer, I know), but I do suspect Type 1 will be “cured” before Type 2. Why? Because Type 1 seems a little more straightforward in it’s mechanism and presentation: genetic susceptibility; environmental trigger; and autoimmune attack. While there is variation in “Type 1s,” it’s a lot less varied than Type 2. I suspect we’ll need 40 different cures for Type 2, and maybe only a couple versions for what we call “Type 1.”

Anyhow, I’m firmly with you in the hoping we can intervene in fetuses or infants to protect those who are genetically susceptible. But, unfortunately, I think we’re decades or centuries away from that kind of intervention being possible.

I agree that no type of diabetes will be cured in our lifetimes, though I don’t think type 1 is easier to cure than type 2. First, as you say, genetic therapies are very far off, so it will be an extremely long and difficult effort to correct the genetic disposition to develop type 1. It certainly consists of a cluster of genes, which doesn’t make things any easier. There are also probably an endless variety of environmental triggers, with the common feature being that they all put the patient under immunological stress which causes the characteristic autoimmune response, so it may never be possible to track down all of them. The triggers are probably universally distributed throughout the environment, so even if they could be identified, it would be impossible to insulate susceptible individuals from them. Finally, trying to intervene at the final stage to suppress the autoimmune attack is fraught with difficulties, since immunosuppressive drugs are extremely toxic to the kidneys especially, and also to the liver, so the patient might well be better off with type 1 diabetes than with the life-long immunosuppression that would be required for immunological interventions. Some new immunosuppressive drugs or something to stimulate beta cell regeneration would also be required, since of all the many thousands of type 1 diabetics who have had organ transplants, no clinically significant amelioration of hyperglycemia under the influence of immunosuppression has been established.

This is true but the cure for type one or any type of diabetes will come from a public research facility. It will come about because of the desire of the researcher to help his fellow man, one that is in it for humanitarian reasons.

1 Like

Interesting points but I’m thankful I’m still fighting after 62 years. Life as a T1D definitely sucks but it sure beats 6 feet under. IMHO we have the new insulins, insulin pumps, CGMs, blood glucose meters because those products can and are used by T2s, which are 95% of the target population. In the 90+ years since insulin’s invention, T1 in the public’s mind, is cured! We’re not dying in a matter of months from diagnoses anymore.
Plus, according to most of the mainstream media, diabetes is just a lifestyle disease and really doesn’t need research or study. “Diabetics should just get off the couch, work out, eat Atkins, Paleo, gluten-free, organic, fresh, vegan, non-inflammatory, no artificial sweeteners, unprocessed…and they could reduce everyone else’s outrageous insurance premiums”.
I won’t see a cure in my lifetime. Even if a cure came tomorrow, Id be too old, the wrong gender, in the wrong location, have too many or not enough diabetic complications to qualify.

But I’m still fighting!

2 Likes

I also feel, after 51 years as a type 1 diabetic, that even if there were a cure tomorrow, it would be too late for me, at least in the sense that it would come too late to have much relative impact on an already essentially diabetic life.

This Disease is a real difficult one, with this there are so many ways that the immune system looks at our body to defend it.
Could be that we have a Hybrid islets that makes our immune system to look at it?
There are so many questions to ask why?
Just in our state of Queensland a doctor had found a Thymus a gland that Children have just under the Thyroid whare there are cells that has 2 Cells an active cell and a non atctvie cells, so havest the active one’s to make the immune system on it’s head. All this is well and good but!! we all dont have living Thymus!!! only Children have so makes the diagnosis at 10 years common in Type One’s.
So what will the immune system be after the Thymus has gone, they migrate to other parts of the body like the Limpth Nodes (Under the Arm) The Spleen, The Bone marrow, if there’s one that i have missed? The LADA is a misstory to me?
We will Celebrate 100 Years of insulin therapy in 2022!! as I will celebrate 50 years of T1 in 2021
A Cure in my life time, i am more inclind to just carry on as we all do and just Ponder on what may be, but the way things are going, i have waited for too long for a cure, i am beginning to say no, sadly. :roll_eyes::cold_sweat:

Was at Joslin for their inpatient week for the newly diagnosed T1s two years later in 1968 (age 12). I was told there would be a cure. 49 years ago!
JDRF only seems to want to fund machines (pumps and CGMs). Not cures.

They say that the reason that effective treatments were developed so quickly for HIV/Aids was because the disease affected a group that already had a lot in common so they were willing to agitate and demonstrate to mobilize government to act. I just wish diabetics, who also have a lot in common from the extremely odd form of life they all have to live, would similarly mobilize and demonstrate for a serious effort to be made to cure the disease.

Any sensible business, if it had a leaky roof that was causing X dollars of damage per year, would be willing to spend at least 10X dollars to stop it, since that investment would pay off well compared to current interest rates. But why do governments invest such miniscule amounts in curing diabetes, when it costs such a huge amount in financial and human losses per year? The disproportion between the yearly cost of diabetes for the entire population and the amount spent to cure it is absurd. In part this can be justified by the fact that there is only a chance that the money invested, even if much greater, would produce a cure, so the value of the investment has to be discounted by the chance it might simply be wasted. But even granting that, it would still be rational to devote more money to a cure.

What I wish is that diabetics would band together for a march on Washington on the hundredth anniversary of the development of insulin in 1922. Perhaps we could conduct some dramatic act of civil disobedience and each dump a month’s worth of syringes in from of the Lincoln Memorial, and do some informational work, so the public wouldn’t assume that we just caused our own disease by lifestyle choices (type 2 diabetes is more determined by genetic factors than type 1 diabetes), and that the disease hadn’t been ‘cured already by insulin.’

1 Like

Yes, if only we marched, it would be cured. :roll_eyes:

5 Likes

Depends on what you call recent. I am astonished at the fact that my grandfather died from T1 diabetes that he contracted at age 20, just about 90 years ago. And here I am, contracting T1 at age 19 and successfully living with it with no complications or limitations for the past 46 years. The difference? 90 years ago there was no readily available insulin! Today there are advanced insulins, delivery devices, and monitoring tools that make management entirely possible.

This is particularly shallow reasoning. In physics, if a situation works in one experiment, then it will always work the same. Everything obeys the laws of physics exactly the same. On the other hand, your diabetes is likely distinctly different than mine, and you likely react to drugs in a different way than I do. People are not the same, not by a long shot. Biological sciences are a moving target, physical sciences are a stationary target.

This is outrageous! As a doctor, I greatly resent this insult! You obviously have absolutely no idea how a professional operates.

When there is not even a cure for the common cold, it is disingenuous to suggest that there is some sort of conspiracy or lack of interest keeping us from a cure for diabetes.

5 Likes

I’m sorry that you feel so much like a victim. I don’t think diabetes made you that way. But in today’s society I guess I understand it.

6 Likes

A blog of interest:

Current Research into Cures for Type-1 Diabetes

I’m a doctor myself and I agree with Seydlitz on her perception of the medical world as having a “firm commitment to existing knowledge and resist innovation”.

The “master and apprentice” model of transmission of knowledge in the medical world is definitely one of the reasons why changes are slow. This is not a comment on individual doctors or their dedication to helping other people, but this offers an explanation of one of the reasons why progress in curing type 1 diabetes is slow.

I would like to offer another explanation from a doctor’s perspective about the lack of urgency there is on finding a cure for type 1 diabetes.
Doctors do not carry the burden of having to deal with type 1 diabetes, day in, day out. When they see someone who has been brought to the emergency department because of T1D, they blame the patient (“he has not been taking care of his diabetes well at all”) instead of the disease.

I’ve heard this name for people with type 2 diabetes in Dutch many times: “fat dumb diabetic” (in Dutch it’s the three D’s: dikke domme diabeet). And you know what? I never said anything about it to the “master”, because I was the “apprentice”.

Nowadays I don’t practice anymore, but when I encouter physicians as a patient I try to educate them. I’m not a diabetic, I have T1D. When they ask me if my diabetes is regulated well, I ask them what they mean. Do you want to hear my last HbA1c (I’m not a number, by the way)? Do you mean that I have found a way to handle the daily burden of having to live with T1D and be a productive member of society as well, so I won’t burden YOU with the daily care of T1D?

I once wrote a letter to the Dutch Royal Dutch Medical Association about their usage of the word “diabetic” instead of “patient with diabetes”, because I find it odd that they keep on using it, because it’s the only disease where they characterize a patient distinctly by their disease and it’s just as easy to use patient or person with diabetes. They never replied to me in person, but published my letter and wrote as rebuttal in their magazine “the word diabetic is in the dictionary”.

I became friends with a collegue (who also decided to give up practising medicine (like me) ) who was the first doctor in my life that was honest enough to tell me that she really didn’t understand T1D and it’s management and asked me to explain it to her. And then it dawned on me: a lot of doctors are afraid to admit that they really don’t have a clue about the management of T1D!

And now I see the signs everywhere: these days I am able to read the letters doctors write to my GP online, and I noticed that a physician assistent had written in a letter to my GP (I had an catheter ablation for atrioventricular nodal reentrant tachycardia last May) that “the patient refused to adhere to the UMC diabetes protocol and wanted to manage the diabetes herself while she was in the hospital”. This was a blatant lie: HE was the one who decided to ditch the UMC diabetes protocol, and I went along because I had decided beforehand I would be a “good” patient and adhere to whatever they wanted from me!

I’m glad to report that he changed the letter when I asked him to, but I wonder…would he have changed the letter if I hadn’t been a doctor myself but “just” a patient?

2 Likes

First off, HIV has no cure—the effective treatments you mention are not equally effective for everyone, and they have significant side effects and must be continuously taken on a rigorous schedule. So I don’t entirely get your point, since it seems like what has been developed for HIV (medications that make it a chronic disease) is what we have for diabetes, not necessarily anything particularly better, and HIV researchers have been pretty stuck when it comes to improving on the anti-retrovirals, such as creating a true vaccine (vs essentially taking the treatment preemptively as a way to prevent infection).

As to your point about activism, HIV/AIDS also is a communicable disease that used to have no effective treatment and was threatening to kill off entire communities of people, and the government specifically refused to recognize the issue at all because of who those people were for many years. Very different situation leading to much more fear and righteous anger on the part of the communities involved. As a researcher, I am frustrated that HIV continues to receive a highly disproportionate amount of research funding in the US, given that it’s now a fairly manageable and preventable condition (and certainly affects fewer people than many other health issues with less funding), but I understand why there was a heavy effort toward HIV initially. I do think that there’s reason to lobby NIH to reallocate some of those funds now based on health needs, but there are a lot of forces at play with those decisions.

2 Likes

Can you back up this claim? And is there any alternative?

They can’t satisfy everyone. I do not care if someone calls me ‘diabetic’ (or ‘diabeet’ in Dutch). Actually, I use that term myself. I don’t see any reason to use a longer term which has exactly the same meaning.

3 Likes

Governments don’t have unlimited amounts of money. There are many more diseases and many more patients who want a cure or treatment for their disease. They want research funding too. Can they have that or are we so selfish that we’re going to demand the money that goes to their research?!

2 Likes

They don’t have to satisfy everyone, refraining from using the term “diabetic” is common practice in medical literature specifically focused on diabetes.

I’m not saying an alternative would be better, I’m just saying that hierarchy is very important in the medical field. A lot of things are done, because “that’s the way we do things” instead of looking at what’s best for the specific patient that is in front of them.

Have you ever read this article by Douwe Draaisma? He makes some terrific points about the wish for doctors to be taking seriously as scientists, but also their lack of confidence, which they are able to disguise because doctors always have the upperhand when dealing with patients!