Chances are as this week winds down, your endocrinologist is out of the office today and tomorrow. He or she may very well be at the big annual clinical endo conference happening in Tennessee this Wednesday through Sunday, bringing in thousands of endos from across the U.S.

Yawn, right?

But wait -- the American Association of Clinical Endocrinologists (AACE) that represents 7,000+ diabetes docs in this country is actually making a big announcement on Friday: the creation of a new sub-group, the American College of Endocrinology Foundation (ACEF), to focus on fundraising and advocacy and working more cooperatively with other stakeholders in the diabetes world, including our own ePatient community.

The issues they'll tackle are the same that we hear about often among our own advocates: legislative priorities like coverage of CGM (continuous glucose monitors) under Medicare, strengthening the diabetes funding and programming throughout the country, creating a National Diabetes Clinical Care Commission, and working to change how endos are paid to review our diabetes data in their offices or remotely -- whiAACE Logoch may sound like just AACE hoping to line their own pockets, but is in fact key for us patients too, as time spent going over our data needs to be a recognized part of the work doctors do for us.

This new collaborative advocacy arm is a big deal, because let's face it, just a few years back, a formal physician's org like AACE (founded 24 years ago as "an avenue for the study of the scientific, social, political, and economic aspects of endocrinology") would have gasped at the thought of partnering with medically untrained patients to lobby on important healthcare policy topics. And now they're embracing patient leaders. Wow!


The new ACEF foundation being unveiled this Friday at the AACE annual meeting will fall under the umbrella of that larger org, and fits alongside the American College of Endocrinology (ACE) that focuses on scientific and academic aspects. (Whoa, those endos do love acronyms.)

We learned about this new foundation while catching up with longtime Michigan endo Dr. George Grunberger, who practices at the Grunberger Diabetes Institute and is largely seen as the "face of AACE" for many of us.

Grunberger tells us it's all about working with the patient community in making diabetes care better across the board. The whole concept actually stems from last fall's Consensus Conference, held by the AACE in Washington D.C. to bring experts into one place to talk about key topics like glucose meter accuracy. The patient advocates in attendance -- including our D-Advocate friends Kelly Close, Bennet Dunlap and Manny Hernandez -- pushed for more patient voice being brought into these conversations (a full report on that is being published in the May edition of the AACE journal, Endocrine Practice).

As a result, Grunberger says this new foundation was born.

That's exciting, as it sounds like we're going to have a better view and more input into what our national group of endos is really focusing on. It was interesting to hear Grunberger say recently that AACE has met specifically with Medicare folk in the past years about CGM coverage, but has basically been told nothing will be done because their hands are tied by Congress. This foundation will allow for more outreach and on-the-ground advocacy, similar to what other big diabetes orgs like ADA and JDRF do with their advocacy efforts on the Hill.

The foundation's initial board of regents will of course include AACE member endos, but also important voices from outside of AACE, including some well-known patient advocates.

Since much of this hasn't been formally announced yet, details are scarce at the moment about the exact structure and priorities of this new foundation. We look forward to hearing more soon, maybe even by watching the annual meeting's activity on Twitter at the #AACE15 hashtag.

The Coding Mess

One of the big issues AACE wants to tackle through this foundation is how billing codes are used for endos to get reimbursed for what they do in their offices and beyond, Grunberger says. For example, they get reimbursed certain amounts from our insurance companies depending on the task -- ranging from general office visits with patients, to writing prescriptions, offering nutrition training or other D-education, and use of electronic health records.

There are thousands of codes, but a consistent theme is that physicians feel they're definitely not being adequately compensated for the work they and their staffs do for patients. This is actually one of the issues that led to the creation of AACE in the first place, making sure there were adequate billing codes for endos to get paid for the work they do.

Today there are thousands of these reimbursement codes, as well as treatment and diagnosis codes, which is inefficient and confusing -- and streamlinig that is a hot topic right now, as physicians nationwide are required to start using a new international coding system beginning in October. See this one-pager about how the entire U.S. health care system will transition to using the ICD-10-CM code set effective October 1, 2015.


Healthcare billing codes

We patients rarely have much of a window into this world of billing codes -- except for a few numbers and letters that appear on our own statements.

Even with all of the thousands of codes that currently exist, there is no standard to get endos reimbursed for reviewing our complex CGM data. This is an issue that AACE has been involved with for years, even crafting a position paper in 2010 on CGM billing codes that goes into the scary reality of how outdated these codes really are for our modern D-tech.

Existing CGM codes were crafted in 2002 and 2006, back in the days when CGM was just beginning to be introduced to the market, so those are woefully outdated for all the options we have today as far as CGM devices and data-sharing tools.

Industry (that develops CGM tech) has no say on the issue, so that means physician groups and doctoDr. Grunberger of AACErs in the trenches are the ones who need to advocate on their own and their patients' behalf. 

So with this new ACEF, Grunberger sees a way to bypass the reluctant federal healthcare agency and instead focus on advocating directly to legislators with our D-Community's help.

Without codes, some physicians practices have resorted to charging patients a fee for CGM or device data download, and some endos have policies of not reviewing CGM data outside the office simply to make sure it's a billable "face-to-face" task they can get reimbursed for. But as Grunberger tells us, it's something many endos just have to "suck up" for the betterment of their patients; even though it eats into their time and ability to run an efficient business.

"Right now, I do that for free," he says. "I could write a prescription for a medication, and get reimbursed the same amount as if I'm spending an hour reviewing CGM graphs and numbers."

Adding to the mess, Grunberger says seasoned endocrinologists with deep experience don't get reimbursed any more than entry-level doctors, unlike in other professions where higher-level execs get paid more than their newer colleagues. In an ideal system, he feels that experience should be reflected in physicians' reimbursements.

Advocating for Change

Getting these changes is no quick thing, as it involves going through the American Medical Association (AMA), which has traditionally governed billing codes and requires a whole complex process to apply for new ones. And now with the new ICD-10 rules being mandated by Oct. 1, the Centers for Medicare/Medicaid Services (CMS) will oversee the massive complex coding system.

The only way doctors can get the attention of decision-makers who can help bypass these hurdles is to raise their voices collectively, and clearly it's key that they hear from us patients on how very important this issue is. Think about it: How many of us have heard our doctors make a comment about "too much data" from a CGM cutting into their already-limited time? And how many times has our D-Community advocated for wider access and use of diabetes devices like CGM and insulin pumps?

They aren't reimbursed as they should be and that has to change. If we want change, we patients also need to raise our voices. We should all be calling or emailing our own endo's offices to let them know we care!

Who knows how effective this new ACEF will be? Still, it's a great move in the right direction -- lobbying for things that matter and including the actual patient community in the efforts.

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


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.