Advocacy or Activism?

Steve Richert reported on his experience at the T1D Exchange Annual Meeting in the Living Vertical blog post called Non-Compliant.

Some of what he reported sounded very familiar, especially the part about the payters panel where Steve said they were “–basically discussing the calculations by which they decide who, what and how to pay out–my ire was sorely provoked.

Over the last couple of years there’s been a number of diabetes patient-medical professional-industry-insurer meetings where the exchanges got heated. And voices were raised. At the T1D Exchange Annual Meeting it was medical professionals who stood up to the payers and said non-compliance was a systems problem not patient failure.

Change is hard. It takes time. It takes dedication. It takes perseverance.

Yes, the larger medical system in the US is, in many ways, broken.

Steve’s conclusion is that advocacy cannot fix a broken system. It’s not enough. Advocacy is powerless against a broken system. The system cannot respond.

He points to activism as the next level of engagement.

What do you think?

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I agree. It’s essential for PWD to have data to see where we are. We have to fight to get coverage for supplies to get it. I think the big problem stems from the way private payer systems cite Medicare’s “4 strips/ day” for T1 as a reasonable solution. T2 get less in the face of a medical situation that, at least scientifically, seems more complicated than T1 but they get no respect or coverage whatsoever. It’s time for a change.

It think DITTO all this right here “I am non-compliant. My blood sugar is just fine, thank you, but I am looking beyond my diabetes and towards the future. 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. In the end it may be all for nothing. The system may get worse and all the nightmares about complications and costs may go unchecked for all of our efforts. Maybe no one will care or listen, so why bother? Thats a question we all have to answer for ourselves. For me the answer is that it is always better to try–and to try hard, like you mean it–and yes, it’s probably going to involve some climbing.”

I am not sure we need to Advocate, and I wonder if Activism is a waste of time as is engaging with bureaucrats and our so called providers and health care professionals and of course the ever “help us with a donation so we can find a cure” conglomerations. I call these my waste of money and timers. What we really need is a Revolution!! Diabetes is not going away, it is nothing ‘new’, and it really only matters when it happens to ME or MINE.

I don’t see the medical system as the problem. I see the definitions and even the diabetics as the bigger issues. We can’t even define compliance, how the heck can we expect it to be assigned proper on us.

I can’t get my head around why this condition gets such “heated exchange”… What exactly do we need to change for a T1D?? My own needs are fairly simple, clearly defined, available (albeit at an outrageous cost), and they have not changed nor will they unless a cure is found. What I think is that the broken thing that needs fixing is The Big Green Giant that wants us to pay for being diabetic !!

I think it’s reasonable to frame a dialogue that makes testing one’s BG or achieving more normalized BG as civil rights for PWD. It makes other conversations, number of test strips, referrals to specialist and other tedious chores we manage to help the system fall into place. Our whole dialogue, the “number of test strip” feud, the number of bottles of insulin feud, the number of pump supplies needed, etc. involves negotiations but a civil rights assertion seems likely to eliminate the wasteful drain on our healthcare system caused by those dialogues. If the grey market bothers them, then pluck it out.

I don’t think that the term non-complaint is totally inappropriate as there are some situations where PWD drift out of trying. It would be nice if the medical industry would recognize these situations as tragic and work to help patients who are in such dire straits. Nothing frosts me more than hearing someone recount stories about docs tossing the term around very loosely. Perhaps if doctors were not writing letters of medical necessity for every request for > 4 test strips/ day, they’d have time to support patients in such dire straits they might give up more than others.


In my view, advocacy is pleading for change, hoping the arguments will win people over and achieve change. If it works, everyone can hug and sing Kumbaya.

But activism is fighting for change. It won’t leave everyone friends. There won’t be any hugging.

Sadly there are things like insurance and nutrition guidelines for which advocacy has been a failure and activism is warranted in order to achieve change.

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I 100% agree with you. Right now, I’m about to enter a battle with my insurance company to start covering my test strips again (they recently decided to no longer cover all brands of test strips because of them being available over the counter). It’s ridiculous that I need to fight with them for something that is basically a necessity for a PWD. In my own little ideal world, there is no reason why a PWD shouldn’t have to worry about receiving the medications and supplies they need in the quantity they require in order to optimally control their diabetes without having to shell out big bucks.

I swear that it feels like my insurance company is more willing to cover for treatments associated with complications from poor diabetes care than cover for the medications and supplies that decrease the chances of those complications occurring.


This stinginess about test strips for T1s is the quintessential example of penny-wise/pound-foolish in the whole system. What, are they afraid we’ll use too many if they don’t hold us back??? I mean, jabbing yourself in the finger is so much fun, right?

In their own interest they should be urging us to use more of 'em and handing them out like M&Ms at a Halloween party. To use a diabetically-incorrect metaphor.

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My layperson’s understanding is that, from the insurer’s p.o.v., short term expenditures that prevent much bigger long-term costs–complications and the expensive treatments thereof-- don’t actually look that attractive because they aren’t the ones who are going to be bearing those costs. The better pay-off for them is holding down the near term expenses that they have to pay and sticking someone else–Medicare–with the bill for the damage later on.

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My feeling is the stinginess on strips is really due to Medicare. Unfortunately Medicare is focused on controlling near term costs and this leads to dysfunctional behavior like this. And insurance companies follow the Medicare lead. Insurance companies could care less if you get 4 strips or 20 strips a day as long as they can raise premiums to cover those expenses.

We could advocate to Medicare til we are blue in face and I don’t think it will make a whit of difference. Change will only come when Medicare is forced to bear projected future costs of complications in todays dollars. That is likely to take activism and new laws from Congress.

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Interesting, as I understood it was a matter of the insurers being happy to leave the costs of poor BG control to others, including Medicare (as I also posted here), but I stand corrected. At any rate the economics are clearly not signaling real costs the way they should.

We do indeed need to somehow change the way strips are handled. They need to be available, to all persons with diabetes, regardless of type. We all get the same complications. We all need to know what our BG is, so as to avoid those complications. The cost of treating/caring for any diabetic complication far outweighs the cost of strips.

And, further, we need our medical community to know and share with their patients when to test … not to just to test one, two, four, or … a day, but when and why they should test and then what to do with that data once they have it. There’s no rhyme or reason given to patients. We need strips to test, but the when and why and what to do about it, is more often than not, lost in the shuffle.

Part of the problem is the gray market for test strips. It’s a vicious circle. Insurers deny people enough strips, so they have to resort to the gray market to buy them (i.e., private parties reselling their strips that were paid for by insurance) and the insurers then don’t want to pay for enough strips because they fear they’ll actually be resold on the gray market. If supplies were priced more reasonably for everyone it might change things. I can really get on board the idea of activism with regard to pricing. I recently got a Dexcom & Animas Ping. The bill to my insurer was over $10,000. But the “agreed price” between insurer and supplier was actually around $6,000, so that’s what the insurer’s payment and my co-payment are based on. What about those with no or poor insurance. Is the cost really $10,000 or $6,000? The system needs to change!


Strips can at least be purchased without insurance or an RX! I think the cost is the biggest issue. There are even less expensive options today. I am able get what I need because I learned how to advocate for myself to fill that need, and I am one of the lucky ones who has a doc who will advocate for me as well. Insurance limits can be negotiated.

Insulin for a pump is another story, there is no way to just walk in to the pharmacy and buy a bottle of rapid (at least not in my zip code(s)). And again, the price is outrageous. I try to remember that health insurance was not designed to fill our closets with strips and lancets and swabs and glucose tabs and even OJ (yep, I’ve seen OJ submitted on a claim before!!), and then there are all of the durables. Also, and this is something I have seen on the DOC again and again, folks use their strips to test friends, family, pets, and even sodas sometimes. I have also seen covered products for sale on line! Don’t think for a second that our providers are not aware of that.

Insurance coverage is no longer just to provide for the payments of services for sickness or injury and to cover for losses from accident, medical expense, disability, or accidental death and dismemberment. I don’t know when this changed but am aware that expectation for insurance coverage has certainly changed and so of course must the cost and limits follow. The last ECD stat I found said *Medical expenditures for people with diabetes are 2.3 times higher than for those without diabetes. And More than 1 in 10 health care dollars in the U.S. are spent directly on diabetes and its complications, and more than 1 in 5 health care dollars in the U.S. goes to the care of people with diagnosed diabetes

This statistical information is from 2012 so we know the numbers have not decreased! Diabetes is epidemic, we should be thankful that today we can’t be denied (at least not in my zip code(s)). I am happy that today we have all of the wonderful things and improved products to keep us out of the hospital for complications. I do think the cost for all of these necessary things needs to be evaluated and would drive the bus to join any activism about that.

I had a thoughtful reply, but erased it before posting.

Judging by the responses so far, it wouldn’t be welcome, would stir negative emotions, and wouldn’t accomplish anything.

So, I’ll just summarize that, based on reading the blog and responses here, this “problem” is only going to get worse.

An illustration of the hidebound ideas about this, from personal experience: A while back when I was still on MDI I found I had unexpectedly run out of strips and dashed to my pharmacy. Got into a bit of a panic because they didn’t have the type for my meter in stock and couldn’t get any until the next day. The pharmacist said “Hey, what’s the big deal, you don’t really need to test more than once a day!” Whaaaaaat??? I have to bolus every time I eat and to do that I need to know what my friggin BG is, you dolt! Well, I didn’t say that last bit. But anyway it turned out he just assumed—I guess because I’m middle-aged—that I was T2 (because people with “juvenile” never grow up, right???), so being out of test strips was “no big deal.” Maybe not exactly as acute a big deal, but still, the dismissive attitude seemed bizarre. Kind of a glimpse for me into the other side of the double standard around these things.

Activism involves large amounts of energy, time and consistent long-term efforts. We have so many systemic issues going on at once these days, that if the activist route is chosen, in my opinion, we need to understand that our group by definition will be small. While the commitment and energy needs to be large. This is a gigantic issue.
Appreciate the question!

@acidrock23 interesting that you frame the discussion as a civil rights issue.

That does open up the dialog beyond “4 strips a day” and moves us toward a systemic change.

I worry that we get so focused on winning specific, individual battles that ultimately we might loose the war for universal access to high quality healthcare.


@LorraineK we often think of activism as a huge, visible effort. But there are small ways each of us can take on advocacy and activism in our daily lives.

I see engaging my PCP in a conversation about my treatment (and not just accepting what is offered) as an act of activism and advocacy. I see educating myself about the various approaches to managing diabetes as activism.

There is a spectrum to activism and advocacy. At different times each of us is at a different place on that spectrum. It’s not just the high-profile activist or advocate who can foster change. Each one of us can. Even if it’s in a small way.

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I see advocacy, for example, as a physician and their staff seeing that approval for tools I need are obtained. Most recently, my physician’s staff had to get approval for something the insurance company always approves. Activism, to me, would be getting the insurance company to take out that approval process. In other words, a systemic change occurs eliminating the extra steps currently in place. In both cases, advocacy and activism, yes, a series of small steps are taken. Thanks Corinna. Good topic and conversation.

To add to the confusion, uh, er discussion :wink:

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