In the January edition of the American Diabetes Association’s flagship professional journal Diabetes Care, the association has issued a document that lays out its wide-ranging official recommendations for diabetes care in the U.S.
This is the ADA’s annual update of their Standards of Medical Care in Diabetes, and the 56-page document deals with everything from classifying the various flavors of diabetes to the use of a 128-Hz tuning fork in foot exams. But unlike past years, this latest update also contains some interesting type 1-specific tidbits that caught my eye.
Yes, you read that right: type 1 diabetes, not the other type that we’re more used to seeing the ADA issue guidelines on.
There are a number of type 1-focused nuggets in this new document, and one of the most exciting is how the ADA is now putting its money where its mouth is as far as more “personalized patient-centered care.” Sure, they claim to be doing the same for type 2 patients, but in that we’re focusing on the type 1 aspect, that’s what we’ll detail for this post.
Type 1 May Be a Family Affair
Remember that Utah family we featured here the other day, with six of their eight kids living with type 1? Well, the ADA is taking notice of this kind of trend.
The ADA’s now telling healthcare providers to consider referring relatives of type 1s for antibody testing via clinical studies like TrialNet. The organization feels that there’s now sufficient evidence to show that this kind of screening can be an effective “advanced warning system” to lower the risk of life-threatening ketoacidosis-style Emergency Room diagnoses of type 1 diabetes.
Quoting the new Standards: “Such testing, coupled with education about symptoms of diabetes and follow-up in an observational clinical study, may allow earlier identification of onset of type 1 diabetes and lessen presentation with ketoacidosis at time of diagnosis.”
And speaking of screening…
More Than Just Diabetes
The 2013 Standards also advise that all type 1 kiddos be screened for celiac disease as soon as possible after diagnosis. The document states that while celiac occurs in less than 1% of the general population, some estimates place the type 1 celiac rate as high as 16%. (Yikes!)
Adults, if not already screened, should also be checked for celiac, as well as other auto immune issues like thyroid and Vitamin B12 deficiency, because of the “increased frequency of other autoimmune diseases in type 1 diabetes.”
This is the part where Amy, Mike and I give our thumbs up in agreement, since on top of type 1 diabetes Amy lives with both gluten intolerance and hypothyroidism, while Mike and I with the latter. Oh, the fun times our trio has! It’s actually pretty revolutionary that ADA is highlighting the type 1-celiac connection, as just a few short years ago, it was nearly impossible (for Amy and others) to find good resources or HCPs familiar with this unpleasant duo.
Test Strips & Taking on “Payers”
This year’s Standards take on health plans in ways both subtle and bold — most notably for type 1s in the areas of BG test strips and analog insulins.
For many years, the ADA guidelines have stated that PWDs on insulin should test “at least three times a day.” Many insurance plans, including Medicare and Medicaid, took this and twisted it to mean a maximum of three tests a day, providing a basis for them to impose strict test-strip rationing that’s been getting worse and worse in recent years.
Cost protestors in New Zealand
But now, the ADA has fired back with some of the strongest language ever in their guidelines, clearly stating that anyone on a pump or multiple daily injections (MDI): “should do SMBG [Self-Monitoring of Blood Glucose] at least prior to meals and snacks, occasionally postprandially, at bedtime, prior to exercise, when they suspect low blood glucose, after treating low blood glucose until they are normoglycemic, and prior to critical tasks such as driving.”
Just to be sure the health plans were listening, the ADA went on and spelled it out with math: “For many patients, this will require testing 6–8 times daily, although individual needs may be greater.”
Send cards and flowers to the ADA’s new Chief Medical Officer Bob Ratner, who I suspect might have had a hand in this. He’s long been critical of health plans “not getting it” that blood sugar testing is the (cheap) key to healthy patients, and that doctors have better things to do with their time than fighting insurance companies all day long for a few meager strips for their patients.
I think with testing volume so clearly spelled out in a respected national Standard of Care, it will be much harder for health plans to deny the coverage of strips as we move forward.
The ADA’s Type 1 Playbook
Type 1s should be treated with MDI or pumps, the 2013 Standards say. And we should get modern analog insulin for our pumps, pens, or syringes to reduce hypo risk. And we should be taught how to count carbs. No more sliding scale!
All diabetes should be treated using a chronic care model, with a medical team composed of providers, nurses, dietitians, pharmacists, mental health professionals. Although diabetes educators aren’t mentioned in the discussion of care teams, there’s plenty of support for the role of the educator in this Standard. It even goes so far as to say education and support is “an integral component of care,” and “should be adequately reimbursed by third-party payers.”
Equally important, the guidelines lay out the approach that any diabetes educator should NOT take: “Current best practice of DSME [diabetes self-management education] is a skill-based approach that focuses on helping those with diabetes make informed self-management choices. DSME has changed from a didactic approach focusing on providing information to more theoretically-based empowerment models that focus on helping those with diabetes make informed self-management decisions.”
Does your CDE empower you, or lecture to you?
On a personal note, I was elated to read this in the ADA document: “There is growing evidence for the role of community health workers and peer and lay leaders in delivering (education and support) in conjunction with the core team.” Yay! (This is the model I function under at my day job.) It took the AADE (American Association of Diabetes Educators) quite a long time to address the role of community health workers, and it’s great to see ADA recognizing them as well!
A Gold Star for CGM
The new guidelines state that CGM “can be a useful tool to lower A1C” in folks 25 years old and older, and “may be helpful” in children, teens, and young adults. Why the weaker support for CGMs for kiddos? So far, clinical studies haven’t shown a robust enough improvement in overall control among youth using CGM, but the ADA points out that “the greatest predictor of A1C lowering…was frequency of sensor use, which was lower in younger age-groups.” In other words, if ya’ can get the kid to wear the damn thing, it will work.
As with the test strip issue, I think the Standard’s support for CGM will help knock down the remaining walls to getting CGMs covered for adult type 1s, and provides at least some ammo to help the parents of type 1 kids.
One Size Doesn’t Fit All, After All
After years of promoting a one-size-fits-all A1C target range, and then easing their stance up a bit last year, the ADA has now adopted a flexible target that
takes into account the age and overall health of the patient, with higher targets in the 8% range for older or sicker patients, 7-ish for most people, and mid-sixes for the young and otherwise healthy.
In a surprise move, the ADA also raised the blood pressure target from 130/80 to 140/80, stating that there was a lack of evidence that the stricter target had any positive long-term impact on PWD health.
Oh, and just so you don’t lose the next time you play Scrabble: “microalbumin” (a measure of kidney health) has been renamed and will henceforth be called “increased urinary albumin excretion,” because why use one word when you can use four instead?
Don’t Blame the Patient
And in one last refreshing turnaround, the new Standards specifically tell docs to quit blaming their patients when things don’t go according to plan. Docs are instead instructed to know that it is their responsibility to re-think barriers to patient success — including income, health literacy, diabetes distress, depression, and competing demands.
WOW. We’re seeing a whole new ADA here. I just hope the doctors who treat diabetes will read this new document cover-to-cover and take the advice to heart.
Maybe the ADA can’t live up to their motto, Together we CAN Stop Diabetes®, but these new guidelines sure might make living with diabetes a bit easier for ALL of us.
)
These are very encouraging changes! Thanks for reporting! I had gotten so disillusioned with them that I probably wouldn’t have gotten this info from them, but since you shined a light on it…
Great news about the increased awareness of Celiac in Type 1! Just to clarify – does Amy have gluten intolerance or Celiac? They are two very different things. Celiac is the auto-immune disorder related more to Type 1, while “gluten intolerance” is not. The writing makes it seem as if they are the same thing.
@Christine – I was told I have a severe wheat allergy, which was triggered by my other autoimmune issues (allergies are also autoimmune).
But the lifestyle & treatment is nearly identical to celiac — I’m just not quite so hyper-sensitive as some with celiac. Please see:
http://www.diabetesmine.com/2011/05/life-without-gluten.html
Thanks for the clarification, Amy. I have Celiac, so I get a little picky about the way it is perceived. Since an intolerance (not immune related) is different from an allergy (immune related), I am curious why he chose “gluten intolerance” to describe your condition when what you really have is an allergy, which is more related to the topic about which he is writing. ? And someone with a wheat allergy can still eat gluten, correct? I think the more clear we can be about Celiac disease the better, as it is very misunderstood. I still think that the way the article is written makes it sound as if gluten intolerance and Celiac are the same thing.
No Christine, I should have said gluten allergy. I cannot eat gluten.
Thanks for pointing out these significant changes and enhancements in the Standards of Medical Care in Diabetes.
As people living with diabetes, there’s an opportunity to get on the same page with practitioners regarding patient-centered care: The American Diabetes Association accepts public comments about the document and the related Clinical Practice Recommendations at http://professional.diabetes.org/ResourcesForProfessionals.aspx?cid=84160.
Thanks so much for leaving this link, Kelly! So very important that we not only have this coverage when the standards come out, but that we in the D-Community participate in creating these written guidelines.
Thanks for this link Kelly.
Kelly, I’m glad to see they’re taking input — I’m sure this always happened, but it’s nice to know. I’ll take a good luck at this new document, so happy that it’s freely available.
It’s great to read that the ADA published a standard for using more test strips. I’d like to see them modify their next iteration of this standard and encourage postprandial testing after every meal, not just “occasionally.”
Successful diabetes management to me means that I’m a constant student of what food does to my BGs. Consistent postprandial fingersticks are critical to informing decisions that result in optimal control for me.
I use, on average, 14 strips per day and consider this rate of strip use integral to my overall health and safety. I’m glad the ADA included language that recognizes that some diabetics may need to test more than 6-8 times per day.
This is great news. Wil, thanks for including so much detail. I’m going to go read the standards myself, but I doubt I could spell it out as well as you did here. Thanks
I commend your intent to read the document! For those short on time, there’s an Executive Summary (the CliffsNotes-style version). Next up on required reading for informed patients: that package insert in our test strip boxes
I love those inserts Kelly. Always carry a few with me..in case the table I’m sitting at is wobbly!
How novel of the American Diabetes Association to finally update their standards for Type 1s. It isn’t enough to make me see them as a leader in diabetes care, however, since both my current and former endocrinologists have been applying these principals for at least 10 years. It’s an improvement, but it doesn’t make them a leader, only a follower.
The diabetics in my family were diagnosed in early 30′s. So I made sure my daughter was aware of symptoms when she reached 30. It would be great to have the family tree noted re. this.
I use a pump and find that Medicare will give me more strips if I provide a log every few months… a nuisance, but I’m willing to do it since they come at no cost to me.
In so many ways, the ADA has failed to advocate for Type 1 diabetics. I agree they are following the obvious in this report. But, since this is what we have, at least some good news is coming our way. There is no doubt, without frequent knowledge of blood sugar, there is no way one can keep their blood sugar range in tight control.
If we care about ourselves, all type 1 diabetics would demand that care equate to a hemoglobin A1c level of at least 6.5 (or so). It is well known that anything above that level (long term) leads to undesirable consequences.
So, whatever is needed to support us to get there must be provided (whether you need a pump, strips, a CGM, or education, or a partnership with other diabetics, or a course on carb counting, etc.). This also means that Type 1 diabetics should keep the pressure on everyone to provide us with tools that allow us to control our blood sugar. CGM is a start. But we need innovation. We need to demand companies put silicon efforts into bringing quality products to us. At least Dexcom is one company we could use as an example. In this respect, JDRF is way ahead of the ADA in supporting technology companies in making cutting edge devices.
But why is it that it takes the ADA to say we have known for so long in order to get the changes we need to be implemented. I think this organization has too much clout. It is 2013, and they finally state a diabetic has a right to test themselves 6-8 times per day. I was doing that 20 years ago. And it is a tragedy for this organization to have taken so long to advocate on our behalf.
We need a serious movement to shake things up. I would advocate it starts here at Diabetes Mine and all the followers of this wonderful blog. I think the ADA should answer why it has taken them so long to do the obvious. They need to recognize their shortcomings.
It is truly amazing that in the year 2013, a type 1 diabetic has to fight his or her insurance company for 8 test strips a day.
It is depressing state of affairs. We need to demand basic level of care as we know it should be (a CGM is you need it, a pump if you will use it, 10 to 20 strips is so required, and the insulin that works best for you—believe it or not, Humalog and Apidra work very differently in action and duration in different people).
Daniel, FYI 6.5% isn’t always achievable even with a lot of work. There’s increasing evidence that glycemic variability plays a key part. I shoot for 7.5% to reduce my risks of lows and seizure. I’m thrilled for those who can hit 6.5% or less, but it’s not worth the risk to me.
I do fully agree that we need to be given every tool (devices, training, coaching, etc.) that lets us achieve targets that work well for us.
I’ve been a member of the ADA naysayers group. They may not work solely on the behalf of T1s but they do accomplish a lot of advocacy and legal stuff that makes living with diabetes much easier.
as a Type 2 on Medicare, my pharmacy doesn’t allow me to test more than 3 times per day UNLESS i have a note from my endo. my drugstore – giant supermarket in willow grove pa – mails me a form to fill in my glucose numbers which i must mail to them monthly. quite a hassle but i do test 6 times a day and need them strips. today i also have an appt with my CDE – nutritionist – b/c i still need help with my diet.
As a Type I, I had stopped all support of the ADA. It was frustrating to get so much Type II advice in Diabetes Forecast. I felt like were were never the focus of anything. Thank you so much for this update; I would have never known that they updated their recommendations without this article.
I’m just on the cusp of getting the CGM. My insurance company (which in every way is an EXCELLENT provider for diabetes-related care) asked for 30 days of blood sugars and then 90 days before they would grant approval. I believe that approval was granted because of hypo unawareness and because I take between 6-12 blood sugars a day anyway. I’m so grateful to the ADA for recommending this as a standard tool for care.
Diabetes is ALL about prevention and maintenance. Until medicine, as a whole, starts taking preventive care seriously (CGM, gym memberships, education payments, cheaper strips), insurance companies will continue to pay out money for hospital stays and we will continue to suffer with complications.
For those who are interested, this is article will explain what I mean by the in-depth cholesterol test:
http://www.drsinatra.com/the-cholesterol-numbers-doctors-should-be-measuring
This test just might save your life.
The ADA is all wrong on this issue. Maybe in 15 years they will get it right.
After reading the whole report, I found the dietary recommendation section well written in this respect: out with the one size fits all diet. The ADA paper talked about the utility of a low carb diet, Mediterranean diet, and a low fat diet. I prefer a low carb diet. But, I am must admit, I almost fell over when I did not read any scare tactics being given regarding a low carb diet. And at least ridiculous assumptions were never made about low carb diets in the paper such as ketones will kill you (this paper is excellent on many fronts and quotes the premier expert on metabolism as saying ketosis is a natural state of our bodies). Of course, he is not talking about diabetic
ketoacidosis:
http://www.nytimes.com/2002/07/07/magazine/what-if-it-s-all-been-a-big-fat-lie.html?pagewanted=all&src=pm
But one part of this paper that should be read is in regards to heart disease. As you know, it states in the paper that there really is no study at all that proves a statin is effective in preventing heart disease in type 1 diabetics. Right there in the ADA paper this is expressed. In addition, all statin studies usually demonstrates that if something like 100 people are treated with a statin, you might be able to prevent 1 heart attack. Statins are not very effective. Though the paper does not quote the Farmington study which shows around 50% of people who have a heart attack have low cholesterol and normal LDL levels.
But the ridiculous section of this ADA paper is the section stating that the ADA does not recommend particle size testing of our cholesterol. The ADA states we do not need to know this information because it probably will not change treatment. What a bunch of dopes for saying this. All diabetics should have a particle size test such as VAP to see what kind of HDL, LDL, and other markers such as Lpa. Knowing this tells you much more than a simple cholesterol panel. I encourage everyone to read up on this issue and demand quality care. For example, if you have high LDL but have large particle size LDL, you do not need a statin. VAP testing, or particle size testing, is the only way to know if you have a cholesterol profile that is dangerous. And of course, the ADA states know where that a cardiologist should be on our team of care providers. At least most endocrinologists understand particle size and the importance of it before treating everyone with a statin.
I give this ADA paper a C-. And it definitely needs some improvement.
Hi I am a T1 Diabetic from New Zealand that pic is what is happening over here our government has decided 1 size does fit all and has moved to a sole supply agreement with the CareSens brand of meters in the name of saving 30 million dollars.
As a T1 mom with 3 children with T1 we use the cgm not to lower their A1c levels but more for safety issues. And a bettter way to catch numbers from dropping too low (in our case) . It also educates me to see what foods are causing the spikes and how long it takes to spike…something the meter wouldn’t tell me unless I poked their fingers a hundred times a day (probably exaggerated.) Thanks for sharing all the great information!
Dear Regge, if I had a hat on I’d take it off for you! You must be one organized and disciplined mom to keep track of 3 T1 children’s diets, insulin and blood sugars – in addition to your own. Promise me that you’ll write a book someday soon about your life, I’ll buy the first copy! I am in awe.
As soon as I get out of this hospital I’ll write a BIG thank-you card to Bob Ratner. That ‘small’ change alone is huge for so many folks. Thanks Wil for a wonderful overview and analysis of the article.
[...] From DiabetesMine: [...]
I see the value of CGM use for children that goes way beyond the A1c. It’s value actually has little to do with A1c, but quality of life for both parent and child.
I began leaving a lengthy comment here, but expanded my thoughts in a blog post: http://www.d-mom.com/?p=20793
Looks like progress.
Now if only my insurance company would cover a CGM without forcing me to let my numbers slide first!
We are thankful for the JDRF and we must be thankful for all the ADA has done too.
Thank you for bringing this to my attenion. I am glad to see the ADA promotes one aspect of Dr. Bernstein’s recommendations–SMBG–while
he is still alive. Dr. Bernstein says that more than 90 % of his type 1 patients have hypothyroidism. And a majority have some other kind of autoimmune disorder, e.g. celiac disease or psoriasis or the even more obscure antibody disease he suffers from. Guess the human genome was not fully debugged before release. Too late now!