Diabetes Blog Week: Message Monday

I am beyond thrilled to have started The Chronic Scholar blog in time for the Seventh Annual Diabetes Blog week! Karen over at Bitter-Sweet Diabetes is such a gem in our community and I am so thankful for her work here.

Today’s topic was my suggestion. I wrote this suggestion under the impression that our sense of community may be strengthened by it. Our collective sentiments are representative of our community, and possibly people with diabetes in general. How often do we look at and examine our message though? How often do we analyze the effectiveness, possible results, and second-order consequences of the sentiments we articulate through our stories? I personally wanted to opportunity and space to explore my main diabetes messages, so I am extra thankful to Karen for picking this topic.

I haven’t been the first PWD to admit today that my message has changed over the course of writing a blog. I started it when I was working in the Bay Area at The Diabetes Hands Foundation and am now with DiabetesSisters and a second-year PhD student in Disability Studies in Chicago. I’m thankful for blogging, in retrospect, because it shows my changes over time. I get to read how I was feeling four years ago. What a wonderful opportunity.

With that said, what are the messages I put out into the world via my blog, and what do I hope they accomplish? Well, below are my top two messages. Both stem from personal experience, the latter from my studies in critical theory, and they speak to one another.

Message 1: Diabetes looks like everyone you have ever met, no matter the type, no matter the circumstance.

Can type 1 look like a child? Yes. Can it also look like a grandparent? Yes.  Can type 2 look like a child? Yes. Can it also look like a grandparent? Yes. And everywhere in between. Diabetes does not discriminate, nor does it choose its vessels based on ‘lifestyle.’ The most important message I want to spread by telling personal stories is that diabetes is more complex than the one-dimensional caricature blasted through popular media.

Message 2: When persons with type 1 set themselves apart from type 2 by saying things like “Type 1 means I did nothing to cause this,” we are inevitably strengthening the type 2 stereotype we are attempting to distance ourselves from to begin with.

This is a tricky message to share and to explain. It is complicated and has a couple of moving parts. Moreover, this second message is a reflection of how my messages have changed over time. When I began blogging, I wanted the world to know about type 1. I wanted my friends and family to know that what I endured everyday was more difficult than Wilfred Brimley made it sound. I wanted Ellen to tell the internet and Hollywood to stop confusing my disease with someone else’s.

It was with great humility that I began to witness the second-order consequences of my message and mission to educate. By demanding there is a difference, I reinforce that difference; I authorize it. In this scenario, I, as the educated patient give permission to those being educated to continue believing that type 2 looks they way they think it does, fat and old, bad and sad.

Simply separating myself and my diabetes from THAT type 2 diabetes, I do nothing to fight stigma, but in fact reinforce it.

The message which I stand by now has been my hardest diabetes lesson thus far. As I continue to move through life with this disease, with this plastic pancreas hooked at the side of my jeans, I will be watchful of the impact of my messages. I will allow for humility to guide me, espicially when my righteousness is called into question by doing so.

 


Today’s topic:  Click for the Message Monday – Monday 5/16 Link List.
Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

 

 

 

 

 

UnitedHealthcare Policy Change: A Systemic Issue

Diabetes Supplies

Earlier this month, UnitedHealthcare announced a policy change that impacts people with diabetes of all types. As established by a new partnership with Medtronic, UnitedHealthcare has dedicated a “preferred Durable Medical Equipment provider” through which to cover.

DiaTribe’s article  explains the impact of this new policy on patients:

“If you are currently on a non-Medtronic pump and have United insurance, this news has no immediate impact. Your pump supplies will be covered as long as your pump is under its four-year warranty and still functioning properly. Once your pump goes out of warranty and/or breaks, however, you will be required to switch to a Medtronic pump.” – Adam Brown and Kelly Close

As a patient, potentially facing coerced changes in my medical delivery regimen, I must FIRST look at who is responsible. Is it Medtronic? It is UnitedHealthcare? Or could it be but a glimpse of something far more harrowing?

Do you remember in April 2014, when the New York Times journalist, Elizabeth Rosenthal published an article entitled, “Even Small Medical Advances Can Mean Big Jumps In Bills.”  Rosenthal’s main argument, that small diabetes tech innovations are little more than planned obsolescence, was heavily contested in the Diabetes Online Community. Just as we are seeing with this UnitedHealthcare’s policy change, advocates are now taking action. Bloggers are sharing their stories and outrage over the loss in autonomy and choice resulting from this venture. One advocate, Mike Hoskins, bravely went a step further by sharing this daring piece which suggests a personal boycott of Medtronic products.

Coverage of advances and innovative technologies and treatments for persons with diabetes is threatened beyond the reach of the media and beyond our storytelling efforts. Perhaps a larger contributor to and influence over cost-benefit analysis performed by insurance companies, are the guidelines set forth by biomedical ethicists. In the dangerous line of declaring right and wrong, bioethicists’ works are subject to misinterpretation. Consider the following discussion of ordinary verses extraordinary treatment.

 

Beauchamp and Childress, authors of the widely-circulated bioethics text, Biomedical Ethics, set for distinctions between what is to be considered an ordinary or extraordinary treatment. Ordinary treatments, or those which cannot be omitted or declined are likened to “obligatory”, “customary”,  “natural”, “noninvasive”, “inexpensive”, or “routine” treatment. In contrast, extraordinary treatments, or those which may be legitimately omitted or declined are likened to “non-obligatory”, “unusual”, “uncustomary”, “complex”, “artificial”, “invasive”, “expensive”, or “heroic” treatment. While the authors draw attention to the danger in such a broad categorization, calling it “morally misleading” and too subjective, they fail to address a most vital question. Who decides?

In the cost-risk-benefit analysis behind every decision about a course of medical treatment, whose expertise is most valued? Who gets the final say? The doctor? The patient? The insurance company? The answer is not the patient, for if it was, every patient would have the medical devices they see fitting for their lifestyle. Nor do the doctors get the final say, for if they did, every patient would have the medical devices recommended to them by their doctors. By process of elimination, then, the answer of who decides whom gets a certain treatment, is the insurance company. By looking to the ethical guidelines on distinctions between ordinary (inexpensive) or extraordinary (expensive), the insurance companies can justifiably (legally) deny a person with diabetes access to an innovate management device. The same continuous glucose monitor a diabetes caregiver and advocate credits for saving her daughter’s life is deemed ‘unnecessary’, “complex”, and ‘expensive’ by her insurers. In the dangerous line of declaring right and wrong, bioethical guidelines, by proxy, threaten access to advancing technologies for people with diabetes.

Why do we need to consider texts like Biomedical Ethics? Because it is a mechanism of a MUCH BIGGER systemic issue, and we cannot ignore it.

However, what’s more, we need to go even one step further. For if the insurance companies CAN BE BOUGHT, if their cost-analysis can be swayed by the manufactures and sellers of specific treatment options, then the above analysis fails. It fails because the maker of  supplies covered is given systematic and legal permission to offer said companies large payouts for partnership. That is, large producers of medical equipment are now the ultimate decision makers.

Our problem is about the allowance for competitive bidding at all. Why do our laws permit the sacrifice of the health and wellness of our people for the greed and capital-growth of a business?

We cannot stop our advocacy efforts at a boycott, although starting there is an excellent idea.   The fact that Medtronic was able to outbid every other pump company (to begin with) simply  is a product of their already pervasive monopoly over the market. Medtronic has industry influence because our laws ALLOW for them to.

We aren’t dealing with one greedy pharmaceutical company and a payer driven solely by their profit-margins. We are dealing with a healthcare system saturated with the values of capitalism, rewarding the diminution of patient-physican autonomy with profits. We are dealing with a systemic issue far greater than this one venture.

All things considered, protesting a systemic issue is a HUGE undertaking.

Many online advocates have already addressed the issue using hashtags like #DiabetesAccessMatters and #PatientsOverProfit. Mike Hoskins of DiabetesMine recognized many advocates and listed many suggestions for patients in the diabetes community on how to begin that process.

One of the suggested actions coming up which DOES ADDRESS A BIGGER ISSUE is the DPAC Tweet-in on May 12th. DPAC_Tweet_In_May-768x768

 “Diabetes is self-managed and everyone’s management is individualized.  Patients and their healthcare teams should define the best path for living well with diabetes. Government bureaucrats and insurance company cost accountants should not veto doctors’ orders.”

 

It is time for us advocates to use this glimpse of a faulty system as motivation to take action against a much larger systemic issue impacting not only everyone with diabetes, but every single patient in the Unites States.

A big job lays ahead of us. Are you ready to take action?