Type 1 vs. Diabetes Magazines

Type 1 and LADA
1

Do any other Type 1s feel disheartened by diabetes magazines’ inattention to the Type 1 demographic?

For some reason, I decided a few months ago to give Diabetes Self-Management another try after canceling a previous subscription a few years ago. I picked up a copy at my endocrinologist’s office and thought that it would help me stay more current on what’s in the technology and management news for Type 1.

After a few months of receiving their publication, I find that maybe 1 page out of a hundred ever relates to anything going on in my “self-management.” Yes, I’ll find a recipe or maybe an ad for a Humalog pen, but all of the articles seem to pertain to either Type 2 or the onset of long-term complications. I never see articles on bolusing or CGMS or research on Type 1.

In this month’s issue, I was excited to see they had an article on Insulin Pumps (even if it was geared toward “parents” of diabetics), but it seemed to be presenting pumps as some new and questionable treatment, pointing out that it’s no better or worse than MDI (debatable, to say the least) and how the sites can fall out, you can hit a bad site, etc. I felt like the article could have been written ten years ago.

I don’t know. I’m tired of paying for subscriptions that don’t apply to me. I get discouraged by how underrepresented and undercatered to the demographic of adult Type 1 truly is. Either magazines are talking to my mommy or they just aren’t talking to me. I’ve written a letter to their editor asking for more representation of Type 1 in their articles, but considering how small a slice of the sugar-free pie we really represent, I doubt things will ever change.

Your thoughts? Do you have a favorite diabetes magazine as a Type 1 (online or print)? Are there any you hate? Do you just want me to stop my whining? :wink:

2

It is frustrating to me how little T1 is considered in any press. I really, strongly (trying to not say, “hate,”) dislike it when I read about diabetes and they are refering to insulin resistance. Brings us back to the old arguement about 2 different diseases. I have pretty much given up on the magazines…too much talk about eating healthy carbs when I am looking for inspiration to cut back on all carbs.

3

Sounds like there is a market here :slight_smile: Anyone was to start a magazine? grin

4

I appreciate your whining! As a type 1 editor of a diabetes magazine edited primarily for people living with type 2, just wanted to let you know I hear you. Like diabetes itself, it’s a matter of numbers, especially when it comes to consumer magazines.

The type 1 market is relatively tiny (3-5% of the entire diabetes population–although I personally think not all adult type 1s are properly counted in this figure) that it’s not a workable business model to aim a print publication at just the type 1 audience (roughly a million adults in America). One million is an impressive number, but not all will or can afford to buy a publication, not all actually intensively self-manage, etc.

The low overhead of operating an online site is more cost effective. That’s where I find a larger quantity of specific type 1 self-management information, such as how to customize multiple basal rates, avoid lows during exercise, and advice on insertion sets and gushers.

Even with type 2, there is LOTS of newly diagnosed and basic info available in print and online, much less specific content related to long-term management. That’s because as articles get more specific, there are fewer readers who can relate.

I went to a JDRF fundraiser last year and was a little disgusted that the MC kept going on about “help these little kids with diabetes. They just want to live a normal life. Please, won’t you help them?” All the while, this 40-year-old kid was thinking in a very immature way, “What about us adult type 1s?!!!”

As an editor, I have to wrestle with limited page count and the fact that so many people come to the magazine as newly diagnosed PWDs type 2, often with very little to no medical nutrition therapy or even one visit to a diabetes educator. So the basics need to be covered–and revisited. But that doesn’t leave much room for other types of articles.

I hear there has been some discussion at JDRF and in the diabetes online community to “remember the adult type 1s!” Although not likely to take place as a magazine, perhaps a big conference (pharma, we’d need your help underwriting the costs) and some sort of online event (so more people could participate) would be possibilities? I’d love it!

Now, back to editing a really great article about whether vitamins and supplements are worth the money for people (type 1 and type 2) living with diabetes!

5

I think that all the magazine stuff is entirely out of date, anyway, so I don’t really care anymore. I’ve found that online communities like TuDiabetes and others are the best way to get up-to-date info and to get suggestions on how to do new things with the pump and how to analyze CGM data. It seems like Type 1 makes up the majority of online diabetes communities, anyway. I checked out the AADE conference schedule, and it is kind of scary how not-current and Type-2 related all of those classes/presentations look to be. So I figure if our CDEs aren’t getting enough timely and Type-1 info, how can we expect the mags to do it better and earlier?

6

That JDRF type of thing is more frustrating to me than the magazine thing. When I was a child and seeing the children in the ads, it was a little heartening knowing that at least someone was working on something for children. But the minute I became an adult, it was like, just give us your money and step aside please, we want to help these children. Disgusted with the whole thing.

7

I agree. The only magazine I can actually stomach (without getting pissed off) is Diabetic Living magazine. I’ve also found Diabetes Health to be a good one- but they both only cover about 10 of the 60 pages with PWD 1. It’s still more coverage than the other magazines which only print maybe one article per issue about T1.

I understand it’s not cost effective to post articles to the small minority that is T1D, so I’ve just learned to turn a blind eye toward it and focus on getting myself healthy through online forums and discussions. I’ve pretty much given up the battle against the mags- I mean it’s not ENTIRELY their fault. Even the media/ news/ movies portray T1D to be nothing while T2D is EVERYWHERE. I cringe when a diabetes commercial comes on TV because almost NEVER does it pertain to me. It’s like they’re MOCKING us. haha. It’s really angering… but… oh well.

I started my own site: www.FightingTheUnseen.com
and I wrote a fiction love story about T1D “Wretched (this is my sorry)” instead. (through Amazon)

I’m sticking it to the “man”. haha

8

You said it, we’re a small demographic.

I haven’t found anything specific to Type I’s, but I’m not looking for the same data you are in terms of research and development. I’m mostly looking to read about other people’s experience and to get a sense of connection. Most of my resources are on-line - I have an extensive “Diabetes” bookmark list. I get more from the blogosphere than from magazines. And the ads are less intrusive. In relatively close order of preference my resources are:

  1. Here (tudiabetes)
  2. Diabetes Mine
  3. Six Until Me
  4. Diatribe

There are also some diabetic athlete sites I frequent

Diabetes Exercise and Sports Association (http://www.diabetes-exercise.org/)
Running Ahead’s Diabetic Runner’s forum (http://www.runningahead.com/groups/diabetic_runners/Forum) where I learned about tudiabetes

and various Yahoo and Google groups.

9

Hi Kelly: Melitta the Science Geek here. Type 1 diabetes is not some tiny percentage of the total diabetes population, nor are we just 1 million people. In information distributed to laypeople, ADA consistently says that Type 2 diabetes represents 90-95% of cases of diabetes in America and that Type 1 diabetes represents 5-10% of all cases of diabetes. However, this is incorrect according to ADA’s own peer-reviewed scientific journals. That 90-95% Type 2 statistic includes people with latent autoimmune diabetes in adults (LADA), and according to the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus (as published in ADA journals), “Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur.” Furthermore, the Expert Committee’s definition of Type 1 diabetes by the clearly encompasses all autoimmune diabetes, regardless of age, which includes LADA (“Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults).”) According to Irl Hirsch M.D., member of the Expert Committee, “The term latent autoimmune diabetes of adults (LADA) as originally described represents perhaps as many as 10 to 20% of adult-onset patients with diabetes.” Doing the math, Type 1 diabetes represents about 20% of all people with diabetes. Not trivial at all. John Walsh, author of “Pumping Insulin”, says that classical onset Type 1 diabetes represents 5 to 10% of all cases of diabetes and adult onset Type 1 diabetes represents 10 to 15% of call cases of diabetes. In the landmark United Kingdom Prospective Diabetes Study (UKPDS) of Type 2 diabetes, 10% of the people that supposedly had Type 2 had ICA and/or anti-GAD antibodies, and clearly had Type 1 diabetes (Zimmet et. al., 1999). A new book, Type 1 Diabetes in Adults: Principles and Practice (Informa Healthcare, 2008) says that adult-onset autoimmune diabetes is two to three times more common than classic childhood onset autoimmune diabetes (p. 27). Whew! Enough stats for now.

10

JDRF focuses on kids with Type 1 because they garner sympathy and therefore MONEY. However, recently JDRF has asked for input on how to reach out to adults with Type 1, and I will be attending a focus group session in San Francisco on August 15 where JDRF is seeking input on how to reach out to Type 1 adults. My local JDRF chapter now sends out volunteers to help out new onset adult Type 1s. Of course, a major problem is that so many of us adult-onset Type 1s are initially misdiagnosed as having Type 2 strictly based on our age (not etiology), so initially many of us would not get “picked up” as having new onset Type 1.

11

Thanks for the data!

I agree that adult type 1s aren’t properly counted. But we still don’t have a good source for a number that policymakers, for example, will pay attention to, Let alone corporate investors!

No matter the real number, the type 1 audience is still quite, quite small for profit-making companies (those who aren’t in the never-ending business of selling test strips or meds, for example).

In the world of health magazine publishing (and publishing is an industry that’s not doing so well), an audience is counted by the number of people who acknowledge they have the condition (or work in the health field or care for someone with the condition), who read, and who have the ability to purchase magazines in the country of publication. So even at, say, 3 million, the adult type 1 US audience is limited.

But if print publishing isn’t cost-effective, there are other ways to reach people. Online, for one.

I’ve read often here (and experienced myself) how frustrating it is to attend diabetes self-management training courses or workshops and find then tailored to type 2. So definitley I applaud everyone who is working with non-profits and advocacy groups and simply by speaking up on their own to ensure that type 1s are able to have a voice, be heard, and receive support!

12

Oops, the SF JDRF focus group meeting is August 19, not 15. Melitta

13

I think perception has alot to do with it.

Why aren’t there more people in diabetic education classes? Because after your first one (or even before) you realize they’re tailored to T2. So why SHOULD a T1 sign up? So if someone just looks at how many T1’s are registered, of course it’s going to be a small number- the class doesn’t meet their needs!

I’d like to see how many people register if there is ever a class that’s advertised as for T1s! If I have to hear about meal exchanges one more time… grrrr

I just think that the mindset of “oh, well, it’s a small population because we don’t get many people to sign up” is false. More people would sign up if the content was actually tailored to them, I think.
Who wants to sign up for a class that doesn’t teach what you’re trying to learn? It’s not like educators can’t read thru the many blogs and websites online and find the same questions asked over and over again, yet I never see classes on them. For such a supposed small population, I sure see a lot of the same questions asked year after year after year…

There’s a need alright. I think if the perception changes that we may be smallER than T2 but we have MANY needs and a desire for education, maybe we’d stand a chance of getting some attention paid to our needs.

14

As bad as it sounds, I am still dealing with a resentment for people with type 2 diabetes or just overweight people in general at this point. "oh you can go to burgerking and eat 4 whoppers.. sure ok.. your pancreas works fine.. awesome" It angers me that people think, I "ate" myself into this mess or that I was overweight at one point. People who don't take care of themselves are the poster children for this desease and it makes type 1's look irreseponsible. The media doesn't help the situation... It really irks me..

15

I have been hearing since I was 7 years old "how'd you get diabetes, you're not fat" This misconception has been around for a long time, as long as certain criteria is repeated in the media, it's going to be hard to break those stereotypes.

My mom had Diabetes Forecast for a while when I was growing up, and I did read it but as I got older I noticed how it heavily leaned towards Type 2 needs. I don't get magazines any more, I just read books and come here.

16

I think you have hit the nail on the head.

The market is all about Type 2 but I think this will be good for everyone. Just a few years ago there was never enough money to support new product development but now the focus is on Type 2 and with all of the new media coverage investors are pouring money into the system and the insurance company's are now covering things like pumps and CGMS, this was unheard of just a few years ago.

At one time I subscribed to Diabetes Forecast but I would rather spend my money supporting a web based product.

I'm LADA so there was never much of a support system offered and the first good support I found was on a internet bulletin board back in the mid 90's. New PWD's have access to mountains of information, it took me 20 years to learn how to successfully manage my BG and most of the information was found by chance...just luck.

17

Well, an original participant in this discussion is our fellow member Kelly Rawlings who is herself T1. Kelly is now the editor at Diabetes Forecast. But her comments still likely remain true (from when she was editor at Diabetic Living). The vast majority of the readership of these magazines are newly diagnosed PWD, and 90% of them are T2s. And it is not just T1s, As a veteran T2, I find these publications generally not very interesting. If you really have an idea for an interesting article that would of interest to a board audience, I think Kelly is always looking for ideas.

I also do as JohnG does and turn to other sources of information. In the meantime, I actually instead read a lot of professional journals and publications. Things intended for medical professionals.

18

My mom sometimes picks up magazines if she sees "Diabetes" in the title while she's shopping and gives them to me ... Every time, they end up being either about Type 2 or about preventing diabetes. I know she means well, so I'm never sure how to react except to glance through it and then recycle it later.

A great online magazine (for both Type 1s and Type 2s, but with a pretty balanced approach) is diaTribe. I also find Diabetes Health pretty good; I read the online version, but it seem...

19

I really wish access to the primary literature was as readily availabe when I was going through grad school as it is today. If you're looking for current research on anything, including diabetes, it's there for the taking.

20

I have to say, there have been quite a few really good articles on T1 subjects in DiabetesHealth, including a number from our own Katherine Marple (Marps). I actually think if you really want good articles for T1s, perhaps it is time for some of us to contribute some.