JDRF Gets Feisty on Insurance and Congressional Diabetes Funding Advocacy

Curated by Claudia Shannon / Research Scientist / ishonest

Diagnosed with type 1 just before Christmas 1972 when he was 7 years old, Tom Webb is no stranger to dealing with insurance hassles through the years. This South Carolina D-peep has been through it all — or so he thought.

Lately, in trying to get a CGM through United Healthcare and medical supply company Byram Healthcare, he’s faced new and unforeseen challenges in his four decades with diabetes…

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Coverage denials, with varying reasons and excuses. Lost paperwork. Lack of understanding by the payers on what exactly is being prescribed.

As a longtime T1 with retinopathy and worsening vision, Tom has been adamant about getting a CGM to help him manage his blood sugars, instead of 24/7 nursing care or a seeing-eye alert dog. When he finally did get a CGM, the other shoe dropped, so to speak — erroneous submissions to Medicare that led to extraordinarily high out-of-pocket costs, despite promises that the device would be covered.

“I don’t want to see another diabetic have to bear the headaches I have been through. There must be a better way to deal with all of these insurance hassles, to make sure we’re able to get what we need when we need it!” he says.

Luckily, JDRF is getting increasingly aggressive on tackling these barriers. They’ve just launched a new JDRF Health Insurance Resource Guide that appears to be a first-of-its-kind in our D-Community, specifically addressing the barriers to access and care as described first-hand by T1 PWDs, caregivers and healthcare providers — and offering step-by-step tips on how to combat these.

The JDRF Health Insurance Guide
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Designed to tackle knowledge gaps and general issues PWDs face in the insurance coverage universe, the online resource guide from the JDRF covers 9 topic areas:

“None of this is easy to navigate,” JDRF’s Senior VP of Advocacy and Policy Cynthia Rice tells us. “Even once a plan does decide it’ll cover something, people still have enormous problems and obstacles that get thrown in their way to actually obtaining what they need. So this Health Insurance Guide is meant to help people navigate those individual challenges that come their way. We’ve included guidance from experts and those who’ve dealt with this, to increase the odds of being successful.”

Some specifics included in the handy resource JDRF has created:

This comprehensive guide is part of the JDRF’s Coverage2Control campaign, working to empower people to reach out to insurers to self-advocate on access, affordability, and choice for diabetes medications and tools. JDRF has also been holding a number of behind-the-scenes discussions with insurers and payers to help them better understand what the D-Community faces on access and affordability, and persuade those payers to expand their diabetes coverage.

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“This all works together, with the aim of broad access and choice,” Rice says.

Winning Over Anthem

Here’s the full revised policy, saying that the 670G will be specifically covered in certain situations.

We hear the JDRF played a big part in lobbying for this change with Anthem, with multiple meetings and individual advocates contacting the insurer to advocate. Thus, JDRF proudly put out a press release on the Anthem coverage turnaround, painting it as a big victory for their #Coverage2Control campaign.

Congressional Diabetes Funding Controversy

Beyond insurance-related advocacy, JDRF has also been very active lately pushing Congress to continue funding important T1D research funding.

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Specifically, the Special Diabetes Program (SDP) is now 20 years old (created in 1997), and provides $150 million in funding for diabetes research each year. It’s always on the diabetes advocacy radar because Congress doesn’t renew it for more than a year or two at a time, and that’s often tucked into mass bills at the last minute.

This year, that didn’t happen and the SDP actually expired on Sept. 30, 2017. Both the JDRF and American Diabetes Association have been advocating pretty hardcore for #RenewSDP, especially in recent months with all the back-and-forth on healthcare and tax reform.

But these two major diabetes advocacy orgs aren’t necessarily on the same page here.

What’s happened is that Congress has tied the two-year SDP funding renewal to another popular program helping lower-income kids stay healthy, but it’s all packaged into a big bill that makes dramatic cuts to the important Prevention and Public Health Fund that helps millions nationwide. Bottom line: Those two popular programs come at a cost, and it means a balancing of priorities.

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JDRF has continued to push hard for SDP renewal, without caveats — whereas others have expressed concern that the SDP should not be tied to that bigger package, where a victory on one side can hurt other health funding. Many patient organizations and groups have written protest letters. The American Diabetes Association has taken an individual stance on this, along with publicizing a joint position with the Endocrine Society that the SDP needs renewal, but not at the cost of cutting other public health funds or programs.

Honestly, we have to wonder what happens if members of the Congressional Diabetes Caucuses in both the U.S. House and Senate look for guidance from the two diabetes orgs on this, and see different responses where one is cautioning approval while the other is wholeheartedly pushing for renewal. Isn’t that confusing? It would be nice to see the two orgs agree that SDP funding ought to appear in a separate, clean bill so lawmakers can evaulate each health program on its own merits.

“We’re not as involved in (discussion on what other legislation SDP funding is tied to) as we are reinforcing why the program funding matters,” Rice says. “There are a lot of other issues Congress is considering that are clearly important on health, but for this set of legislative packages, we’re really focused on making sure the program for T1D research can get renewed.”

She adds that although the wording in their pleas may differ, she believes the ADA and JDRF messages compliment each other, and that’s something Congress should take into consideration.

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At the end of the day, whatever can be done to help PWDs in the trenches like Tom Webb in South Carolina is a win, and we appreciate JDRF’s work digging into the nitty-gritty details on how to approach insurance plans.

Hopefully, JDRF can take a similarly practical and effective approach toward pushing for complicated Congressional choices that impact the health of so many, with diabetes and beyond.

This content is created for Diabetes Mine, a leading consumer health blog focused on the diabetes community that joined ishonest Media in 2015. The Diabetes Mine team is made up of informed patient advocates who are also trained journalists. We focus on providing content that informs and inspires people affected by diabetes.

Read more on: diabetesmine


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