This week's Diabetes Forum 2009 conference was two full days of presentations on policy and reform — a dizzying array of statistics and political jargon and acronyms like "four-tier formularies," "SNPs" and "VBID" and "double-digit Medicare margin."  Surely all very important stuff in the netherworlds of managed care and reimbursement administration.  But what the heck?!  I gladly reminded this crowd that these terms mean little if nothing to the average patient.

So what DOES concern the average patient?  Besides the too-high-costs of everything health and diabetes-related, of course?  (that one's a no-brainer).  I was summoned to discuss some things needed from a patient perspective to really change diabetes care for the better.

Weeelll, based on my own personal experience, and my numerous interactions with you all and the members of DiabeticConnect, I can talk about with confidence about a number of things that stand in our way.  One very prominent stumbling block being the issue of DISPARATE CARE -- otherwise known as "the myth of the healthcare team."

That is, all the diabetes literature refers to working with "your healthcare team," as if some coordinated group including your family physician, endocrinologist, nutritionist, exercise physiologist and diabetic ophthalmologist were waiting just outside your door to help you, swapping information and conferring about your care.  AS IF.diabetes-reality-bites

The reality is more that — unless you're lucky enough to be covered by an insurer with a comprehensive "closed system" like Kaiser Permanente -- there's virtually no coordination between medical professionals. It's up to us patients to call up and beg for copies of test results, or insist (and pay!) for providers to actually share information.

So you've seen that dietitian your doctor recommended? Don't expect your doctor to know about it, let alone have any records of what was decided there (your new focus or meal plan). Again, it's up to you to insist that records are faxed over, or sent by old-fashioned post (snail mail).  Even then, you should probably call to check that the documents made it into your file.

So you want to attend that local diabetes education seminar your diabetes educator recommended?  Don't expect to be able to just flash your insurance card and have it covered — goodness, no! You just might end up spending hours on the phone with your insurance provider only to learn that coverage is minimal to null. You'll be paying for this one out-of-pocket.

The onus is on the patient to somehow orchestrate this care, between providers who often sit in unconnected clinics across town or even in different counties.  The reality is that it costs us patients precious time, money and effort to create the semblance of a "healthcare team" — and often it can be a fight every step of the way.  This on top of the burden of doing all the right things to actually take care of our bodies with diabetes.

I've learned on DiabeticConnect in particular how many patients out there have "fallen between the cracks" in terms of:

  • Not having enough basic information about diabetes
  • Having limited access to healthcare providers
  • Not getting enough time with the providers they do see
  • So they're not clear what to focus on...
  • And they don't have adequate insurance coverage — or these days, any coverage at all for many

We talked about a lot of things at this conference, much of it focused on how new technologies can help patients learn more and providers offer better, more coordinated care.  That's all good.  All I'm saying is, the policymakers need to keep the above realities in mind as they move ahead making systemic changes.  And the providers should keep all this in mind when they start throwing the "noncompliant" term around.  Know what I mean?

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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.