What"s Happening in Response to #DiabetesAccessMatters

http://type2diabetestreatment.net/diabetes-mellitus/whats-happening-in-response-to-diabetesaccessmatters/

Getting the diabetes technology and medications that work best for each of us is becoming more difficult. Our access and choices are slowly being stripped away.

And sadly, we"re convinced there"s little that can be done to halt that trend.

Nearly two months have gone by since the Diabetes Community responded in anger about United Healthcare announcing an exclusive deal making Medtronic the preferred brand of insulin pump it would cover. This "Medtronic pump or bust" edict begins in just days, on July 1. That means if you"re someone with diabetes covered by UHC who wants a new, tubed insulin pump that isn"t MedT, you"ll have to fight for coverage with an appeal that may very well be denied -- despite what you and your doctor have agreed is best for you.

This kicked off a widespread grassroots campaign under the moniker #DiabetesAccessMatters.

So what"s been happening since?

A Rolling Protest

Over the past eight weeks, about 20 established advocacy organizations and smaller groups (including us here at DiabetesMine) signed on to a joint Open Letter to UHC. That was published in early June and sent directly to the health insurance giant"s CEO, with hopes that they take note of our concerns and reconsider their restriction of patient choice.

That came on the heels of the American Diabetes Association"s 76th Scientific Sessions in NOLA, where needless to say, #DiabetesAccessMatters was on the tip of everyone"s mind -- with the topic coming up repeatedly in sessions and side conversations.

At the ADA meeting, JDRF and T1DExchange led an on-site group discussion for several-dozen key diabetes advocates in attendance. We offer a rundown of that meeting below.

But the upshot is that there"s no quick fix. Everyone"s trying to figure out "What"s Next?" but the shortfalls of the U.S. healthcare system are just damn complicated, with lots of moving parts. So much is dictated by unintended consequences of federal and state laws, how businesses are responding to the whole healthcare game, and how digital health data can and will be used most effectively to guide decision-making. It’s not easy stuff to figure out.

Long-Term Strategy

Even before the MedT and UHC deal came to light, the T1DExchange and JDRF in March announced a collaboration with the Helmsley Charitable Trust aimed at moving beyond A1C in clinical trials, regulatory reviews and access decision-making. That means they"re fighting to get these authorities to understand that other markers, like Quality of Life, should be considered alongside A1C when prioritizing which tools patients should have easy access to.

During the ADA meeting with advocates, the organizations each went through a set of slides about their own advocacy efforts, followed by a pair of consultants who gave an overview of the Affordable Care Act and how that"s been changing the health insurance system. In many ways, I felt like I was sitting through a company HR meeting during insurance renewal time. The information was very broad-brushed, and didn"t seem to get at the UHC-MedT deal specifically.

But Dr. Henry Anhalt of T1DExchange said it was "time to step back and understand the issue and figure what we can do collectively." He explained that the groups are working on a broad plan that could be used to convince payors and regulators to "see a broader scope of outcomes" and how different technologies and treatments can improve those outcomes.

Great strategy, but it"s definitely a very long-term play. No concrete action is expected until November, when the first draft of a consensus statement should be issued, and then following public comment through early next year, nothing would be finalized until at least mid-2017.

It became clear to us that there are three stages of this -- knowledge about the issue, creating a well-crafted plan, and putting that plan into operation -- and that we are still only in the first phase of gathering information.

Short-term Action Ideas

So what about some short-term plans? What can be done NOW, if anything?

Voicing our concerns to Medtronic will likely have little impact, since the company will only argue that they"re filling a need for the insurance provider and patients. Really it"s the payors who need to be convinced that patient choice matters.

At the ADA meeting, Kelly Close of diaTribe suggested that it would be beneficial to create some sort of Payor Playbook, in hopes of educating insurance companies and distributors what these devices and medications mean to people"s lives. The idea would be to shed light on the real-life impact behind these requests, and the potential health benefits to patients and cost-savings to the system when patients thrive.

In a perfect illustration of the gap between pharmaceutical business and patients" real-world needs, Medtronic is actually communicating that they are proud of this deal; they see it as a way to affect outcomes using the data their technology is generating, and of getting more pumps into the hands of people with diabetes who don"t yet have them.

Meanwhile, there is of course clear and present danger of stifling innovation -- because why would investors back any entrepreneur in the diabetes space if there"s so little chance that new devices will be made widely available to patients?!

I"m afraid no one has answers on what we can do immediately to effect change. While we"re all collecting data and coordinating long-term strategies, the only real path forward we have is to revisit the advocacy suggestions mapped out in May:

• Share our stories - Visit the Diabetes Patient Advocacy Coalition"s Access Matters online hub to add your own account of how this access issue impacts real people. Those stories will be shared with health insurers, device manufacturers, medical professionals, and elected officials.

• Complain to Medtronic - Even though they"re unlikely to initiate change, they should know that the Patient Community stands in protest of these exclusive agreements. Reach them at @MDT_Diabetes or at Facebook.com/MedtronicDiabetes.

• Talk to your diabetes care team - Let"s help physicians and educators understand what"s really happening here. This insurance mandate means it becomes more work for patients and their medical team to get the devices they need and want. More work, more time, more resources required.

• Contact employers and insurance brokers - If you"re under a workplace health plan, you can advocate to insurance brokers, who often have effective channels to communicate back to these payers (insurance companies). It would be very powerful it enough employer health plans started raising a fuss about these restrictions on patient choice.

• Appeal, appeal, appeal! Don"t take lying down what any insurance companies tell you. If your insurer says No to a particular treatment or device, it"s worth taking the time to appeal that decision, working with your doctors and care team -- even if you may be denied. Be a squeaky wheel for your own sake and all of ours!

If we"re lucky, some movement will happen on this issue toward the latter part of 2017. Meanwhile, we may see more of these MedT-UHC type deals materializing, which will make it that much more difficult for our community to buck the system.

((sigh))

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn"t adhere to Healthline"s editorial guidelines. For more information about Healthline"s partnership with Diabetes Mine, please click here.

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