On Saying Yes: Another MasterLab Reflection

Have you ever been witness to something unjust – someone being teased or treated unfairly? Chances are you have. Chances are also high that upon witnessing such an event, you have felt a specific kind of deep-seeded urge to somehow restore that balance and justice. However, if you are anything like me, that urge is often ignored. I push it away in fear of possibly making the situation worse or because I feel virtually powerless to help. What is more, this urge bubbles up for bigger events, too. For example, my injustice antenna alarms wildly when I hear about a person with a diabetes being hospitalized because they couldn’t afford insulin. I become simultaneously angry and helpless toward a system that unfairly discriminates against those living with chronic illness by making them pay for their life-sustaining medicines. I sometimes feel powerless to make any change to that system because I rely on it for my own wellness, and because I am just one single person. Being at MasterLab this year was eye opening in that it truly challenged the helpless part of my response to the injustice antenna going off.

One of the best talks of the day, and the only one that got a standing ovation, was given by Roniece Weaver, Executive Director of Hebni Nutrition Consultants, registered dietitian and author. She spoke about collaboration and sustainability when attempting to make change with underserved communities. Weaver began her talk with an array of statistics and findings from her own studies on nutritional educational program interventions. Her strategy was to provide nutritional education to communities who lacked access to such information. At first I was rolling my eyes.

I thought to myself, “Here we go another researcher blaming diabetes on individuals for poor food choices and ‘lifestyle factors’; Another researcher who expects that the prevalence of diabetes is a problem of the person and not the society and environment in which that person lives.”

However, about midway through her talk, Weaver’s tune changed. She shifted her position to include the social components contributing to health disparities between privileged and underserved populations. Weaver and her team went beyond education. They also brought produce to the mom&pop shops in food deserts that typically only served the usual gas station food options. Weaver said, “we needed to increase access to whole foods,” but doing so is “not about putting a big box store into a neighborhood, that wouldn’t be affordable.” In a place where food insecurity is high (meaning low-income, using food stamps etc.) opening an expensive grocery fails to meet people where they are at. Diabetes Advocate, Cara Richards tweeted the following:

Screenshot 2016-07-06 10.01.25

My ears perked up with surprise. Maybe Weaver wasn’t just another researcher blaming health issues on individuals over social conditions. Maybe Weaver was presenting something else entirely… Turned out, she was.

Screenshot 2016-07-06 10.15.42

Weaver’s whole message shifted dramatically in my eyes. Her research wasn’t blame-based, it was solution-based. What she shared next had advocates in the room tearing up. Weaver then told all of us about her own methods of advocacy and what practicing those methods did for one community.

Meet FreshStop, a produce shop on wheels.         bus_loading

The concept of FreshStop was inspired by a subscription box service called Blue Apron that delivers fresh produce with recipe cards for making quick healthy meals at home. Though innovative and convenient for those wanting to improve mealtime at home, Blue Apron is not affordable for the average joe. Weaver recalled her thought process, “How do you get something like Blue Apron into low-income communities?” How do we open up health-forward innovations to those who are routinely denied access? Isn’t that the question we all ought to be asking?

How do we increase the reach of the innovations and programs we advocate for to include those who perhaps need it most?

As a person with diabetes, I want tech advancement to happen because I want living with diabetes to be less of a burden on me. As an advocate, I want those innovations to extend beyond people like me who are privileged enough to have insurance, access to local knowledgable doctors, friends in the diabetes community, access to higher education, and time to self-manage. As an advocate, I know that for our system to be just and fair, all who are interested ought to have access to the medicine and medical equipment.

Weaver is a bold advocate and researcher who is a living example of how to extend innovation beyond the bounds of privilege. Her work reminded me that I am not powerless  within the system that perpetuates injustice and health-disparities.

At MasterLab, through Weaver’s talk among many others’, I learned that giving in to the feeling of powerless is but another way to say no. And, I don’t want to say no. I want to act on that urge I feel to restore justice when witnessing unfairness. I want to give up passivity and try harder.
And I know that the only way I can create change is if I try.
The only way to go beyond the bounds of privilege is to reject the feeling of powerlessness and say YESgiphy

Yes, I can stand up to injustice.

Yes, I can be creative and find solutions that go beyond the bounds of privilege.

Yes, I can be an agent of change.

Yes.

 

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?