More Advocacy Happening on #DiabetesAccessMatters

http://type2diabetestreatment.net/diabetes-mellitus/more-advocacy-happening-on-diabetesaccessmatters/

In the three months since health insurance giant United Health Care made the controversial decision to offer only Medtronic insulin pumps to its customers and limit coverage on other brands, our Diabetes Community has been hard at work figuring out the best way to respond.

The progess isn"t always easy to see, but in case you"re wondering: Yes, our Diabetes Community is moving the needle on the initiative dubbed #DiabetesAccessMatters -- with efforts aimed at helping reshape the way insurers govern access to diabetes devices, supplies and medications.

While just a month ago, it seemed that we were spinning our wheels with a lot of talk and no short-term action, things look quite different today. Here"s why...

DPAC Takes Action

Taking the lead on this issue has been the non-profit Diabetes Patient Advocacy Coalition (DPAC) lobbying group, led by advocates Christel Aprigliano and Bennet Dunlap.

On July 26, DPAC coordinated a call with more than a dozen diabetes advocates to brainstorm initial steps. This was the first of what DPAC plans to be a series of discussions over the coming weeks and months. Among the ideas floated were:

• Exposing the access issue at a state level through contacts with state insurance commissioners/regulatory agencies.
• Including the medical community and providing testimonials as to why access is needed.
• Reviewing and utilizing the "secret shopper" surveys done by the American Association of Diabetes Educators (AADE) that included useful figures and information to share throughout the community.
• Sharing results of the T1D Exchange/MyGlu surveys regarding insulin pumps.
• Creating a community survey to capture access pain points and consequences of restricted access across various all organizations.
• Compiling a calendar accessible to all advocates, helping identify who will be at particular meetings for face-to-face collaboration opportunities (including the upcoming AADE annual meeting in San Diego from Aug. 12-15).
• Developing a focused way to disseminate information across all advocacy organizations to ensure we are being strategic and not overlapping in our efforts.
• Holding calls on a regular basis for all interested advocacy organizations and individuals.
• Including industry partners in our efforts, capitalizing on their knowledge and support.

DPAC is also collecting stories and other supporting materials to be shared across the broader D-Community as well as on the #DiabetesAccessMatters Action Center launched in early July.

The first big advocacy push was to target the top execs at big health insurers, via email, social media, letters, and other avenues.

We"re impressed with the way DPAC is challenging the insurance company claims that these "preferred brand agreements" save money and offer more choice for PWDs. They point out that not only is not the case, but the restrictions in place don"t meet the American Diabetes Association"s 2016 Standards of Care.

That site has actually been in the works since this issue first came to light, and the organization is constantly adding more valuable content, including a pretty great “History of Access” timeline of various diabetes treatment and access milestones. To date, DPAC has collected and shared 100+ personal stories as well as more testimontials from health care professionals.

As to the social media campaign to insurance execs, we’re told more than 3,400 letters have been sent to health insurer CEOs and chief medical officers since early July! Some of them have started responding, and DPAC tells us Anthem has issued a comprehensive letter detailing its policies on insulin pumps and also CGM coverage.

This adds to what"s been done by many others in the DOC, including some advocates who sent An Open Letter to UHC"s top brass in June, arguing against this preferred brand agreement and asking the insurer to reconsider its decision. So far, UHC is replying with form letters that essentially say, “We got your message and are sending that to the appropriate party in the company."

Hmmm. Maybe not achieving what many of us want, but at least the insurer and others are taking notice...

“I think we are making a difference,” DPAC"s Christel says. “We are raising awareness outside of community that patients have brains and voices that deserve to be heard. We know that our therapy decisions are individualized, and that by limiting access, they"re forcing us to fit into a therapy rather than the therapy fitting into our life. The needle (an insulin needle!) is moving and it"s because the community is working together. There are more steps to be taken, but this first one on ensuring access gives me hope.”

The Long-Term Playbook

As we reported in late June, the JDRF and T1D Exchange are also collaborating on this topic, engaging advocates to create a longer-term plan to help change the access picture of the broader healthcare landscape. No concrete action is expected on their efforts 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.

Our friends at the research and advocacy group Close Concerns are also proposing a longer-term plan of action, in the form of a sort of "Payor Playbook" that can be used to educate insurers and distributors about 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 health benefits to patients and cost-savings to the system when patients thrive.

That"s important and very needed, but again it"s a longer term measure that isn"t happening anytime soon.

Keep Up the Pressure

We must keep up the pressure on the decision-makers restricting our access and choice, raising our protests directing to insurers and industry who are pulling the strings on these decisions. I"ve done that with Medtronic and am no longer a pump customer of theirs in large part because I don"t feel they represent my D-Community"s best interests. Personally, if we don"t make it known that we"re unhappy with these policies, and aim some of our frustration their way, they won"t get the message. And then, other insurers and industry folk see a sort of green light to follow suit.

It"s also important that we work with doctors and educators to share their POVs on access hurdles, as it"s a hot topic many of them feel strongly about as well.

And without a doubt we need to continue to engage the industry, who are the ones navigating these health insurance coverage issues and often are now increasingly required to illustrate "outcomes-based solutions." We can help them by making it by providing evidence of how important device choices are to patients" success and well-being.

We have a lot of work left to do, now and in the future. But we have high hopes that fighting the good fight will pay off.

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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