Stumble It!
Diabetes Reality Bites
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.
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?
Explore posts in the same categories: D-News Examined, Diabetes Essentials
Great points Amy!
It is so farging difficult to pull all of the pieces together that many of us just throw our hands up and figure out some other (and very much less effective) way to deal with it all.
Posted by: Scott K. Johnson | March 6th, 2009 at 8:17 amYep, I seem to spend more time managing the folks on my “team” (esp the insurance company) than I do managing my condition.
Posted by: Scott Strange | March 6th, 2009 at 9:24 amAmy – Thanks (again) for representing the needs of people living with diabetes. And I agree that we need a network that shares information with those that help us with our treatment plan. But I think the insurers (public & private) need help. Here’s a big (and possibly crazy) idea: a diabetes medical network with centralized patient data and access to the med professionals necessary to deliver results. We’d start small & the insurers would fund our trial. Success would be defined by the % of diabetics with targeted A1Cs. The benefits should exceed costs as the $s spent on quality preventative care is small compared to $s spent on complications.
Posted by: Reed | March 6th, 2009 at 10:15 amNaomi Berrie Diabetes Center, a part of Columbia Medical Center, is a comprehensive diabetes center in New York City that offers care, endocrinologist, nutritionist, eye doctor, CDE, all under one roof. They take most insurance. I highly recommend them for any and all who live within two hours of New York City. We did transfer to a very highly rated center in Westchester County, since it was so close to home. The new center would not fight insurance for our strips, limiting us to six per day. Naomie Berrie’s Pediatric Endocrinologist (Dr. Mary Pat Gallagher) makes sure my niece is covered with enough blood sugar strips (she is 12; hence highly erratic blood sugars) so she can test as many times as we need to and has also helped us get coverage for the cgms. Although we still had to fight for it, her input was crucial. Naomie Berrie also works with adults with Type 1, as well as children and adults with Type 2 Diabetes.
Posted by: Jan | March 6th, 2009 at 10:23 amI’ve not often seen “lucky” and “Kaiser Permanente” used in the same sentence!
Posted by: M | March 6th, 2009 at 12:02 pmThere really is a strong need to improve diabetes education among patients. So many individuals need personalized attention and careful counseling. However, they only get peripheral education and are expected to “learn as they go along.”
Posted by: Joseph Kim, MD, MPH | March 6th, 2009 at 4:42 pmSpeaking for myself, as a type 1, I have a hard time understanding the concept of “diabetes education.” I don’t get it. I have yet to speak to a “diabetes educator” who has a deep understanding of what type 1 is all about. I’m very skeptical of these educators; I could learn a lot more from Wikipedia or just googling “type 1 diabetes.” I am only a med student, I haven’t even taken step 1 of the boards yet, but I was asking lots of questions of these educators that they couldn’t answer. They couldn’t even cite studies or tangible, independently verifiable evidence to back up their A1c recommendations (such as my 5.2% A1c being “too low,” as I was told). That is a big problem. They just seemed to parrot a “one size fits all” out-of-date protocol that was useless and meaningless to me.
I don’t like the idea of a care team, for myself at least. That whole concept rubs me the wrong way. I don’t anticipate needing a care team unless I wind up in the ICU, God forbid. It’s just as well that this idea turns me off because I have no doubt my Blue Cross wouldn’t hear of covering any part of it.
Posted by: Lauren | March 6th, 2009 at 11:21 pmHey Amy: I pray every night to Obama in hopes that he will deliver us from diabetes. I know he will and I can sense that you know he will do this for us no matter what. I think a good start will be the total takeover of healthcare by the federal government. I don’t think private businesses should be allowed to make a profit on diabetes. The government can fix this and find a cure for us. Not the private sector? Why do you accept advertisements from the private sector? Perhaps the government could fund this site rather than you having to lie down with the devil to keep this going? Be creative and reject advertisement from businesses. We dont need them!
Posted by: Denny | March 10th, 2009 at 5:06 amWow, as a regular poster on this blog, I am really annoyed by this new crop of ranters who are basically mocking others rather than addressing serious questions.
As a regular reader and commenter, I have often said things in my comments that are not popular, and therefore I know Amy is very tolerant and appreciative of the diversity of opinions among her readers. However, many of these most recent posts (such as the one above) are disrespectful, immature, and often absurd — not to mention completely uninformed about the entire subject of this blog, the reality of living with diabetes. What a shame.
Posted by: Lauren | March 10th, 2009 at 3:33 pmI also do want to make it clear that, at some point, you the caretaker/parent or PWD will know yourself/your child better than the CDE or endo and you should empower yourself to make the final decision regarding adjustments. That the endo or CDE can make a suggestion that is a bit “off”, as sometimes diabetes management is an art rather than a science and sometimes you just have to trust your own judgment over that of the “experts.” But it is crucial that the endo team will write the prescription in such a way that you can get the maximum number of strips if you need more, that they will help you get the continuous monitor if you need it — I see this as their main purpose. The only CDEs that I have found were able to make accurate adjustments and suggestions were the ones that had Type 1 themselves. Having access to the nutritionist (I personally did not find very useful, though some might), eye doctor, etc. under one roof is great. Endo can also spot other medical problems that may arise as a result of diabetes or help you with 504 issues with the school.
Posted by: Jan | March 12th, 2009 at 11:31 amAmy,
As a commuincations and marketing employee with a large DME I find your posts and this blog exceptionally informative. Thanks to outspoken diabetes advocates, I now know how to help provide you with better care and supplies.
I couldn’t agree more about the myth of the healthcare team, and in my industry, I see it first hand.
Please consider visiting the blog I write and administrate for our business, I try to discuss comprehensive topics on a daily basis, and please feel free to leave suggestions.
I’ll definitely keep coming back here!
Nicole
Posted by: Nicole | March 13th, 2009 at 1:50 pm