Diabetes Access Issues Campaign Fights Restricted Choice

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

And sadly, we are convinced there is little that can be done to halt this trend.

UHC pump choice logoAlmost two months have gone by as the Diabetes Community reacted in anger about United Healthcare announcing an exclusive deal making Medtronic the preferred brand of insulin pump it’d cover. This “Medtronic pump or float” edict starts in just days, on July 1. That means if you’re somebody with diabetes insured by UHC who would like a brand new, tubed insulin pump that is not MedT, you’ll have to fight for policy with a charm that might very well be denied — despite what you and your physician have agreed is most effective for you.

So what’s been happening since?

A Rolling Protest

Over the past eight months, about 20 established advocacy associations and bigger groups (including us here at DiabetesMine) signed to some joint Open Letter to UHC. That was printed in early June and sent directly to the health insurance giant’s CEO, with hopes that they be aware of their concerns and reconsider their limitation of individual choice.

This 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 head — with the topic coming up in sessions and side conversations.

At the ADA meeting, JDRF and T1DExchange directed an on-site group conversation for several-dozen key diabetes assistants in attendance. We provide a rundown of that assembly below.

However, the upshot is that there is no quick fix. Everybody’s trying to figure out “What’s Next?” However, the shortfalls of this U.S. health care system are simply damn complicated, with a lot of moving components. So much is ordered by unintended impacts of state and federal laws, how companies are responding to the whole healthcare match, and how digital health data can and will be utilized most effectively to direct decision-making. It’s hard things.

Long-Term Strategy

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 past A1C in clinical trials, regulatory inspections and access decision. That means they are fighting to find these governments to understand that other markers, such as 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 associations each moved through a set of slides about their own advocacy efforts, followed by a set of advisers who gave an overview of the Affordable Care Act and the way that has been changing the health insurance system. In a lot of ways, I felt like I had been sitting through a business HR assembly during insurance renewal period. The data was quite broad-brushed, and did not appear to have at the UHC-MedT bargain specifically.

However, Dr. Henry Anhalt of T1DExchange said it was “time to step back and understand that the matter and figure out what we can do together” He explained that the groups are working on a broad plan that could be employed to persuade payors and regulators to “view a wider scope of results” and the way different technologies and treatments can improve those results.

Fantastic strategy, but it’s undoubtedly an extremely long-term play. No concrete action is expected until November, once the initial draft of a consensus statement should be issued, and then following public comment through the following year, nothing could be finalized until mid-2017.

It became apparent to us that there are three stages of this — knowledge about the matter, creating a well-crafted plan, and putting that plan into operation — and that we are still just in the first phase of collecting information.

Short-term Action Suggestions

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

Voicing our worries to Medtronic will probably have little effect, because the corporation is only going to assert that they are filling a need for the insurance provider and patients. Really it’s the payors who need to be convinced that individual choice matters.

At the ADA meeting, Kelly Close of diaTribe indicated that it could be beneficial to create some type of Payor Playbook, in hopes of teaching 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 possible health benefits to patients and cost-savings to the system when patients flourish.

In a perfect case of the gap between pharmaceutical company and patients’ real-world needs, Medtronic is really communicating that they are proud of this deal; they view it as a way to affect outcomes using the information their technology is generating, and of getting more pumps to the hands of individuals with diabetes that don’t have them.

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

I am afraid nobody has answers on what we can do quickly to effect change. While we are all collecting organizing and data long-term plans, the only real path forward we have would be to revisit the advocacy tips mapped out in May:

  • Share our tales – See the Diabetes Patient Advocacy Coalition’s Access Matters online hub to include your own account of the way this access issue affects real people. These stories will be shared with health insurance, device makers, medical professionals, and elected officials.
  • Complain to Medtronic – Even though they are not likely to begin change, they should understand that the Patient Community stands in demonstration of these exclusive agreements. Reach them at @MDT_Diabetes or at Facebook.com/MedtronicDiabetes.
  • Talk with your diabetes care staff – Let us help physicians and teachers understand what is actually happening here. This insurance policy mandate implies it becomes work for patients and their health care staff to acquire the devices they want and want. More work, more time, more funds required.
  • Contact employers and insurance agents – If you’re below a workplace health program, you can recommend to insurance agents, who frequently have powerful channels to convey back to these payers (insurance companies). It would be quite powerful it enough employer health programs started raising a fuss about these restrictions on individual choice.
  • Appeal, appeal, appeal! Don’t take lying down that which some other insurance companies tell you. If your insurer says No to a particular treatment or device, it’s well worth taking the time to appeal that decision, working with your physicians and maintenance staff — even if you might be denied. Be a squeaky wheel to your own sake and all ours!

If we are lucky, some movement will happen with this problem toward the latter portion of 2017. Meanwhile, we might see more of these MedT-UHC kind deals materializing, which will make it that much more difficult for our network to buck the system.

Disclaimer: Content created by the Diabetes Mine team. For additional information click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content isn’t medically reviewed and doesn’t adhere to Healthline’s editorial guidelines. To learn more regarding Healthline’s partnership with Diabetes Mine, please click here.

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