Advocacy or Activism?

Diabetes Advocacy
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Thanks for defining these things for us. Too bad that Activism and Advocacy have not produced the necessary changes and approaches so far. That is why I am hoping for a Revolution!

Revolution definition from Cambridge Dictionary:

revolution noun (CHANGE) - a very important change in the way that people do things:
examples
a very important change in the way that people do things:
a technological revolution
Penicillin produced a revolution in medicine.
More examples
Trendspotter Faith Starr believes a revolution is going on in the world of conferencing.
The development of high-yield varieties of rice produced a revolution in the country’s agriculture.
The new materials brought about a revolution in building technology.
The invention marked the beginning of a revolution in information technology.
The industrial revolution created an enormous increase in the production of many types of goods.

It seems to me that the T1D crew write often that the limit on strips is the most important thing worth fighting for. I don’t disagree with that, I use more strips than anyone. However, I do wish that we could set our goals beyond that one need and find ways to reduce or even eliminate the need to fight at all for what we need. As said earlier, these are known and they are not unavailable. I could in fact stay alive if I did not have some bg strips. I would not stay alive without insulin! There are diabetics who have to fight for their lives out there. If I join a cause it will be to advocate and perform activism for changes that will improve all diabetics ability to receive the care and supplies necessary.

Activism, Advocacy… Writing letters, speaking out loud, explaining, educating, meeting with groups to define needs, blah blah blah. Done, done and done. After decades of seeing nothing really changing except the increasing number of diagnosis, it seems like it’s just one more incurable problem.

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Yes, I understand completely where you’re coming from. It’s amazing what people, especially in the medical profession, believe / think they know today. I test an average of ten times per day and wear a CGM. I won’t treat (bolus or eat) without a finger stick. I was told by a few pharmacists, one of whom is family, that … that (testing ten times a day) was obsessive. I was like you, shocked beyond belief.

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Obviously that person has never felt what a blood sugar of 39 or 400 feels like :). Once they experience that I think they may have a different opinion about how often we test.

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I think there’s two elements that offer a simple solution here. The most important is to change our BG targets from 110-140 or whatever they are now to “more normal”. By making the target “imperfect”, it opens the door to continuous improvement, which is a buzzword at the huge corporation that I work at and seems like a reasonable and, clearly, very simple paradigm with which to recast our approach to diabetes. Once this is done, at the top of the “food chain” and we strive towards “more normal” BG, we should reasonably be able to contend that they way to get there is BG testing when we want. I don’t think there’s really a tendency to OCD about testing. It’s not “fun” and, while it’s good to know, the tendency is to be moderately averse to it. And, if test strips are more widely available, the “grey market” that gets insurers’ undies in a bunch is eviscerated and gone from consideration. Why sell them or buy them if you get them? Easy peasy.

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Well, then, I’m an activist. A radical activist.

In my opinion, that was not the sort of “activism” Steve was discussing in his blog. The sort of activism I gleaned from his article is rather obnoxious to me, and generally counter-productive to the cause.

26

Cultural changes are so needed. Whatever we call it, good strategies can be learned from all three.

27

The deuce you say. And here I always thought the shear pleasure of jabbing a sharp piece of metal into my fingers several times a day was one of the chief attractions of becoming a diabetic. :wink:

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This is a great topic. I’m still finding out how to do things in this new, weird place, and I apologize if I am posting in a wrong place…I have “Advocated” for “Activism” off and on for years. Usually in discussions where there were little minor spats between T1s and T2s about whose diabetes was “worse”, as if it was a competition. My feeling has always been that we have more in common than not----And that the only way we had any power to change things, was to become active all together—that’s where the numbers become huge and significant.

When I was first dx and testing 7-8-10 times/day, I learned quickly what I could eat and not. Then, like many of you, I was hit very suddenly with the severe restrictions on testing. I still maintain this is not a bad place to come together—that drop of blood is our gateway to decent control and fewer complications. It is a simply explained issue that can lead to deeper discussions.

Anyway, I did challenge the decision—all the way up the food chain of Kaiser NW. When that did no good, I printed up a small flyer explaining the issue, placed it on end tables all over my nearest Kaiser facility, and stood across the street off their property engaging passers-by—many on their way into the facility–and offering them the flyer to read.

I also have carried TuD postcards with me for 7 years, handing them out all the time—including 13 round trips on Amtrak between Portland and Minneapolis—lots of educating and sometimes just comfort to provide there—one lovely woman on her way to have her foot amputated do to complications.

We Are Everywhere. Models can include the AIDS activists of the early years, as well as the early days of organizing for breast cancer awareness, for instance. One of you folks made an excellent post about our energy limitations, for instance. True and in need of consideration—another reason big numbers of us can help sustain a sort of critical mass.

I wrote a short blog about it called “Diabetes and the Body Politic.” I don’t know how to attach a link here yet…Blessings all…

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5bf3e6a387327b22.png1366×768 192 KB
to post a link, you click the little “chain” link, just to the right of the heart icon below the post!

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Oh–I see–Thanks, Dearheart! So good to “see” you!..

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31

Just read an excellent article from the New Yorker. It is a long read, but very interesting and hopeful. Diabetes gets a good amount of “airtime” towards the end. Perhaps what is happening with medical treatment, can inform how we go about this? http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande

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32

I think I have drafted a half dozen replies to this that failed to express my feelings. I think this one may have it.

I think the first part of diabetes advocacy is supporting each other. Community. That is what tuDiabetes is all about. The community is key to individual success, getting and giving support keeps people engaged in their self-care. It can happen in real life, online and a mixture of both, however, it happens success is advanced by the community.

Advocacy/activism in the policy space can build from that community. Like diabetes advocacy is a chronic process. It something that has to happen on an ongoing basis; the successes are fleeting and apparent failures very obvious.

It is easy to say the patient is non-compliant and easy to say our advocacy is too.

Change can’t happen if no one shows up–you may think no one is listening–and that may be true at times, but it’s no reason to pack up and go home. If you’re too jaded to even get involved–that’s about as compliant as you can get.

Let’s be a little fair. Caring for diabetes is a lot of additional work that people without it don’t do. Add advocacy on top and that is another burden. So the process needs to be easy. In the current policy environment it isn’t the squeaky wheel that get the grease, it is the squeaky wheel that doesn’t get cut as much.

So my two cents is we need to make squeaky easy. Be squeaky enough to start holding policy makers accountable to diabetes in more than a once and done, ‘Checked that box, moving on’ kind of way. Success then becomes less about some perfection and more about successfully sticking with it. And maybe tool stop make that easy.

I am a big fan and student of the HIV moment. Their advocacy is the gold standard for help policy activism. There is an outstanding white paper that adapts HIV success as a model of health care advocacy. It is titled Back to Basics. (http://hcmstrategists.com/wp-content/themes/hcmstrategists/docs/Back2Basics_HIV_AIDSAdvocacy.pdf)

It outlines five key components, three are community, attention and accountability. We have a community. Its first job is making sure nobody is alone with diabetes. If we can then make it easy for that community to become squeak and get policy makers attention and in time hold them accountable, we are batting .600.

Is that perfect? Is anything in diabetes perfect.? Nope

In my mind a wholly different system is looking to perfection, being as squeaky as possible is a start to changes we can make.

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33

Does Medicare currently have an absolute monthly limit on strips? I’ll be going on Medicare in the near future and that’s a huge concern for me as I use a lot.

I also use CGM, and I know Medicare doesn’t currently cover it. MM claims they are working with Medicare to get that changed, but bureaucrats move slowly so I"m not holding my breath. Anyone know where that stands?

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There currently is no Medicare benefit for CGM. Medicare says it is adjunctive to testing with a strip so they do not cover it. That is it is the test strip that determines the therapy action not cgm.

There is legislation in congress to change that. I needs a LOT of attention to go anyplace. The first step would be to get more cosponsorship of the bill, then wide cosponsorship.

Another path to possible approval would de a CGM indication for insulin dosing. Dexcom has spoken about that on earnings calls an it is their stated long term goal to replace test strips.

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Regarding Medicare coverage for CGMs, at least one woman fought (and fought and fought) and was granted coverage after three appeals: https://myglu.org/articles/persistence-triumphs-getting-medicare-to-cover-my-cgm

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@Judith_in_Portland you could post that story right here - move your mouse on the right side of your last comment and you’ll see “reply as a linked topic” and you can add your story as a new topic that is linked to this one.

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I faced the same predicament as you when I went on Medicare last year. I use an average of 14 strips/day, well above the four strip limit that Medicare publishes. Medicare entertains appeals to this number. When I talked to my doctor about it, she said that the most test strips any of her patients receive on Medicare was 10/day. I handed her a copy of the report cited below with the highlight of section cut and pasted below. My doctor submitted the appeal and Medicare currently pays for 14 strips/day. I do have to submit proof from time to time that I actually use 14 strips per day. I have no problem doing that but they have yet to request that log.

Here’s a section copied from a Diabetes Care, an article entitled: Type 1 Diabetes Through the Life Span: A Position Statement of the American Diabetes Association. (July, 2014)

Patients with type 1 diabetes should perform SMBG [self monitoring of blood glucose] prior to meals and snacks, at a minimum, and at other times, including postprandially to assess insulin-to-carbohydrate ratios; at bedtime; midsleep; prior to, during, and/or after exercise; when they suspect low blood glucose; after treating low blood glucose until they have restored normoglycemia; when correcting a high blood glucose level; prior to critical tasks such as driving; and at more frequent intervals during illness or stress. (B)

Individuals with type 1 diabetes need to have unimpeded access to glucose test strips for blood glucose testing. Regardless of age, individuals may require 10 or more strips daily to monitor for hypoglycemia, assess insulin needs prior to eating, and determine if their blood glucose level is safe enough for overnight sleeping. (B)

As you can see, this list nicely covers all the times that monitoring fingerstick blood glucose is appropriate. It’s way more than four times per day. In fact, in light of this list, one could argue that the Medicare restriction undermines the health and well-being of people with diabetes. I especially like the phrase, “determine if their blood glucose level is safe enough for overnight sleeping.”

I know this is a type 1 citation but I think the same case could be made for anyone that uses insulin.

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If you read to the bottom of the link at Glu, you will find out that the insurance company has appealed the decision at the last minute. Unfortunately in these cases the insurance company has been winning the appeals and it is unlikely that this woman will receive CGM coverage.

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39

Interesting. I’m totally missing seeing that information. Where does it say it? She went through three levels of appeal and the post is about her winning the third. So now there is another one?

EDIT I will note that I’m not signed in to GLU so maybe there are comments I can’t see that say that?

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7 days ago in the comments, Dr. Nick replied to Sue from PA with “Medicare appealed the ALJ decision at the last minute. A new battle has ensued.
DO NOT GIVE UP!!!”

Sue from PA is my co-blogger who has been advocating for her husband with Type 1 Diabetes. He received a CGM through the Veterans Administration, but she is still involved in Medicare CGM advocacy.