Wednesday, May 03, 2006

TYPE 1 DIABETES GETS SHORT- SCHRIFT

At my Primary Care Physician's office there are a number of R.N.'s who give classes to those with Insulin Resistance Disease(Type 2 Diabetes) to help provide better management. I met one of these nurses in the elevator today and asked her whether her patients were compliant or non-compliant? She did not know who I was, so I told her that I had Type 1 Diabetes and find that people with T1DM are usually better motivated, knowledgeable and compliant compared with Insulin Resistant Disease. In addition, I said that we for the most part do not have a "weight problem". I went on to tell her that when I was being treated by Fellows in the Endocrinology Department at that hospital that advertises, "don't you deserve this level of care", they (the Fellows) had a mind-set and disposition into just treating Insulin Resistant Disease(Type 2 Diabetes). In so doing, people with T1DM were at a disadvantage and getting "short-schrift". All she said was that most of Diabetes (90%) is of Type 2 and so Physicians will orientate themselves in that direction. This is what I propose:
1. People with T1DM should be treated by Clinical Immunilogists rather than Endocrinologists, since T1DM is "Auto-Immune" in etiology and a mind-set/bias appears in those Physicians who are trained in Endocrinology to just "handle" Insulin Resistant Disease.
2. A new medical nomenclature should be established where those with Insulin Resistant Disease should no longer be called Diabetic or having Diabetes, since it takes away from the true meaning of the word in those with T1DM as well as the fact that these are distinctly TWO DIFFERENT DISEASE ENTITIES.

15 comments:

Scott said...

I can't help but agree with you, but I suspect that getting the medical field to agree will be more challenging. Frankly, I am frustrated with the nurse-educators as well, as most of their education is on losing weight (something I as T1 do not require), yet CDEs are largely ignorant of problems that T1DM patients face ... such as hypoglycemia. My CDE was not even aware of Blood Glucose Awareness Training (BGAT), in spite of it being featured in the journal Diabetes Care (http://care.diabetesjournals.org/cgi/content/full/24/4/637) and I had to find a center where it was taught because few CDEs are even aware of the program. Let me know if you have any luck recruiting people to this line of thinking!

Scott said...

BTW, in case you're interested, I've started a website regarding the involuntary NYC A1C registry (which I am trying to fight). The site needs some edits, but I haven't had time to work on it recently, but the site can be found at: http://www.stopnyca1ctracking.org

You can avoid the registry by using labs that are not ECLRS-enabled (you have to ask until I get a complete list from the NY State Dept. of Health via the Freedom of Information Law, or FOIL).

BetterCell said...

It's good to hear from you Scott. Since both of us have had T1DM for a long time, we both also know of the "catch 22" thinking that also exists within Healthcare. On one hand "They" want those with T1DM to be well-educated in their illness, but when they are in front of people such as you and I they become uneasy, angry, insecure, upset because they, The Medical Profession actually start to see that we might know more than they do(at least just as much) or that we are very involved (which we should be) with our care and not willing to take a "Backseat" nor give up our autonomy. I also read the journals and other literature involving T1DM and presently feel that the "Cure" will be in the awy of Stem Cells rather than islet cell transplants which have no long term success record as well as having the negative effects of taking immunouppressive drugs. People are so hungry to find a "better way" regarding their illness that they get on a bandwagon of popular belief (islet implants) without weighing the consequences or to think more thoroughly as to what they are doing. As you know, there is a lot of politics in medicine.

Nikki said...

I agree with everything you have said. There needs to be a distinction and the battle I have been fighting on how to educate people on the difference between T1 and T2 is endless and frustrating. I am right there with you.

BetterCell said...

Thanks for the feedback Nikki.....You are so right regarding the education of people. I have come to the conclusion, that those with either "closed minds" or/and ignorance are unable to benefit from education. Rather they have created their own reality without any "incoming doors"......Unfortunate for the evolution of wisdom.

Megan said...

I don't agree with immunologists treating autoimmune diseases. There are so many autoimmune diseases affecting so many systems, it makes no sense. They couldn't possibly know enough to treat all the diseases effectively. So it makes more sense to have the specialist of the effected system treat the resulting illness.

I would like to see different names for type 1 and 2 diabetes though. But I don't think that will ever happen for two reasons:

1. It's been this way for too long.
2. Where would that leave LADA, MODY, and Gestational diabetes? They are neither type 1 or 2.

My endo office is pretty good dealing with type 1, and the CDEs there are excellent.

BetterCell said...

Hello Megan....Endocrinologists as well treat many diseases/disorders of the Endocrine Systems besides T1DM. Thyroid Disease, Addison's Disease being some of many others. Some do not even treat Diabetes and will devote their time/research to just one disease entity such as Thyroid. Since T1DM has an autoimmune etiology, it would make more sense/logic to then be treated by a Clinical Immunologist who has an interest, "grasp of", and intelligence for the treatment (clinical) of T1DM. Yes, the field of Immuniology is very vast, with Clinicians who specialize and devote themselves to things like Lupus, Rheumatoid Arthritis and other manifestations involving the immune system. However, as I stated earlier there are also many Endocrinologists who "choose" to concentrate themselves on only a very small area of Endocrine Medicine, be it Insulin resistant Disease(Type 2), Thyroid Disease or another.
As for LADA, MODY and Gestational Diabetes, the first two, can still be handled by a Clinical Immunologist and Gestational Diabetes would be treated by an Ob/Gyn Physician.

jagiemja said...

I totally agree with the whole name change thing. I hate it when people ask me about my pump and than assume that I don't exercise or that I eat to much. The best one I've heard so far is that my mom fed me to much sugar as a baby. Also friends and family get confused when they hear things on the news or online or whatever. I hope that you can find a new doctor. There are wonderful doctors out there who take the time to know type I as well as type II

BetterCell said...

Thank you jagiemja for that thoughtful and kind advice. Yes, it is true I have not found a "wonderful doctor". The last person that I did "find" was a CDE who not only knew more about T1DM than many Doctors, but was more compassionate and had more patience, intelligence and kindness as well. What a mix!!!! Unfortunately, he is no longer in practice.

Caro said...

I'm sorry, but I don't agree that clinical immunologists should treat diabetes.

First up there aren't that many clinical immunologists, as much of their work is laboratory based.

Secondly, clinical immunologists work is mainly concerned with the modification of the immune response, or with severe diseases where normal immunological processes are absent (e.g SCID) In type 1 diabetes, the immune process has already happened, and the islets have been destroyed. Currently there is no way to modify to this process, so no role for the immunologist. They certainly don't have the training to deal with insulin doses and screening for complications. If you give them that training then, voila, you have a diabetologist!

Personally I'd rather the immunologists kept pursuing their very important role in looking for a cure for diabetes, and looking at preventive strategies to modify the autoimmune process before it happens, so that fewer people have to deal with Type 1 in the future.

The best people to treat diabetes are actually diabetologists, who focus only on diabetes, as part of a multidisciplinary team with CDEs, nutritionists, exercise physiologists etc. Sadly there are just too few diabetologists and too few truly integrated teams around. And since 90% of people with diabetes have Type 2, it is totally unsurprising that many of them focus much of their work on that.

The ideal solution would be enough diabetologists focusing solely on Type 1. Sadly that isn't likely to happen.

BetterCell said...

Thanks for your feedback caro, you make many good points in this discussion, However, eventhough there exists many people with Insulin Resistant Disease(Type 2), it does not favor well with me that too few Physicians are available or/and have the knowledge, skill, enthusiasm in treating T1DM. I never have nor do I wish to look upon Medicine as a Business, since my early exposure to this whole disease was at an early age (6 years of age) and the Physicians that I had encountered were more in the practice of medicine and being Physicians in the true sense of that word rather than being Businessmen.Thus if the argument is pursued to its conclusion of what is available out there for T1DM, there is not too many Physicians(Diabetologists, Endocrinologists) who are available. There will also be a mathematical point where those with T1DM, since they are often more intelligent, motivated and educated in their illness as well as given more responsibility in their own treatment, where they will actually know more about T1DM than their Physicians. This is what has occurred with myself.
As to Immunologists making advances in Diabetes, there currently is on-going research involving immune modulation for "recently disvovered' T1DM.

Caro said...

The problem in places where there is no true welfare state, and medical care is not "socialised" is that, inevitably, doctors do become businessmen. They have to balance the books and make a living. Given what they invest in their training, they deserve a decent one!

Even here in the UK, within the National Health Service there are elements of this. I experience it everyday in my work as a dentist. I work 50:50 NHS and Private, but either way I have to be constantly aware of whether the work that I'm doing, in that time that I'm doing it, and what I will be paid for it will provide enough money to cover the cost of materials and equipment, running the surgery and paying my assitant, as well as paying me. (And I'm just an associate! For practice owners the conundrums are far greater. If I fail to make the money add up, I will still take away my share, it is the practice owner that suffers... but obviously they might not want me in their practice anymore!)

To an extent I have to market my work to make the money work. Doctors, outwith the NHS and similar systems, are the same. Targeting people with Type 2, who are present in abundance, is therefore sensible: there is a greater liklihood of building a sucessful practice both clinically and financially.

I can acknowledge that the lack of doctors specialising in Type 1 does, however, stretch beyond this. Even in the UK NHS hospital system, where there truly are none of the financial pressures or incentives on the frontline clinical staff (instead they rest on the hospital trusts and ultimately the Government) there are limited diabetologists specialising in Type 1. Perhaps this is related to the training available to doctors, which is, of course, is ultimately related to money and getting the best value from the resources available.

The answer? I don't think there is one. It is true that money makes the world go round. Sadly I must stand by my assertion in the previous comment that it is unlikely that enough specialist diabetologists focusing solely on Type 1 will ever be available.

As you say, many people with Type 1 are focused and motivated and become greater experts in their condition and its management that any doctor. Perhaps, therefore, a solution lies in reserving the real expertise for those who need it, and letting the rest of get on with it, just providing annual screening.

And in practice, most doctors who treat diabetes manage both types. There are a number of similarities in the management since although the aetiology is different, the end result is often the same. This is especially so given that many people with Type 2 will eventually need insulin therapy in which the principles are the same as for those with Type 1 - even if the required doses are somewhat different! At the end of the day, doctors who treat both conditions has to be better than nothing.

Thanks for your feedback on my blog. I have also responded to you there.

BetterCell said...

Oh.....very sharp and articulate caro. Yes, the reality of making a livelihood is all present whether here in the U.S. or in the U.K. So ably put was your description of the everyday need to make a living at one's work, be it medicine, or making pastry. Yes, it all makes sense. I however, was fortunate enough in remembering my Physician at the age of six. I am sure, that even then, so long ago, he also had to make an income in spite of existing at that time in a different economy which was stronger and where money went much farther along. The reason I am able to remember him, is only because of his kindness, which not only revealed itself in his practice but in his whole entity. This was the same Physician who initally made my diagnosis of T1DM. I have seen many physicians in the course of the years related to Diabetes. It is sad that where medicine has become a business, I have not found more than 1 out of 10 who are still able to hold on to the real essence of being a Physican as primary and being a Businessman second.
I agree that eventhough the etiology is different between T1DM and Insulin Resistant Disease(Type 2) and that much of the treatment is similar where insulin, diet(food intake), exercise will benefit both; the major difference is that through modification of "Lifestyle", Type 2 can forgo the insulin and remain relatively healthy. However the majority of people with Insulin Resistant Disease(Type 2) are not willing to modify their "Lifestyle".

Megan said...

I don't believe type 2 should be called Insulin Resistance Disease. Often times in type 2 diabetes there is a true lack of insulin production occurring in addition to insulin resistance. Insulin resistance could also refer to pre-diabetes, or someone taking steriods, or someone with PCOS, but these conditions are not the same as type 2 diabetes either.

I wonder if people with Diabetes Insipidus get sick of people thinking they should check their blood sugar? I imagine it's the same thing as people with type 1 getting sick of other's assuming our condition is a result of poor diet. But it's the effect of the mass. More people have type 2 than 1 just as more people have DM than DI.

The diabetes center I attend has several endocrinologists, 2 educators, and a nutritionist. It's truely an integrated approach that has proven successful in treating both type 1 and 2.

BetterCell said...

Hello Megan......Very well stated. Yes, there might be some lack of insulin production in Type 2 Diabetes, but I do not thonk it is because of an immune response. As far as Diabetes Insipidus is concerned, it reminds me of someone being treated with Synthroid to correct Hypothyroidism. In this case it would be Vasopressin.....just finding the right dose to alleviate polydipsia and polyuria. You are very fortunate in being able to be part of a Diabetes Center that is well-integrated and staffed with intelligensia/common sense. I would be happy at this point if I could avail myself of even a Primary Physician who has the interest and intelligence in treating T1DM. In this vast "Medical City"(NYC), I have not.

Blog Archive

About Me

My photo
New York, New York, United States
I do not give up my Autonomy,especially to the Medical Profession. Passionate, Creative, Able to see Beauty within Simplicity, I Am Not A Diabetic, rather I have Diabetes (there is a big difference between the two on many levels).Type 1 Diabetes since 5 years of age. Belief in G-D