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From Abby: My First TCOYD.

Over the weekend, the TCOYD conference team visited Albany, NY.  I was hoping to make it to this conference, but ended up all tangled in life stuff.  (Like a Sparling spiderweb.  Ew.  Spiders.)  Thankfully, Abby was nearby and able to spend the day checking out her first TCOYD event.  (And she got to meet up with the fabulous Karen and Caroline, and several other members of the DOC.)  Here's Abby's take on the conference.

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This past Saturday, I attended my first Taking Control of You Diabetes conference in Albany, NY.  It was really amazing, and I'm going to try and recap it in one blog post.  Which is going to be a challenge, but I'm feeling pretty motivated after seeing Dr. Edelman and Dr. Polonsky both speak as part of the conference.  AND I have pictures.  Let's get started!

The recurring theme that was pointed out by Dr. William Polonsky was that there isn’t anyone who doesn’t want to live a long, healthy life. As the day went on, I kept thinking about this and it really resonated with me. No matter how frustrated we get with diabetes, or our doctors, or our diabetes-police support groups … we all want to live a long and healthy life. This lead to the theme that Dr. Steven Edelman repeated;  being educated about how to take care of yourself isn’t enough – we need to be “activated,” or motivated to take action in our own health.

The morning session presented by Dr. Polonsky was called “Balancing the Emotional Highs and Lows of Diabetes.”  I cannot express how refreshing it was to hear a medical professional stand in front of a room full of people and tell us that if we feel sad, defeated, angry, hopeless, and tired because of our disease, we are in the majority and that is normal.  82% of people with diabetes worry about complications.  (My guess would be that the other 18% are under the age of 6 and don’t know what complications are.) I worry about complications every day. Every blood glucose reading I get over 200 mg/dl, I have this lightning-fast thought of “Ugh, I hope my eyes/kidneys/toes/heart/you name it are ok right now.” 

Dr. Polonsky offered up a lot of insight that struck a nerve with me. “We have too many labor saving devices that make it easy to be sedentary – it’s easy for us to be inactive.”  He mentioned this as he was explaining that it’s easy to make excuses not to exercise, but not in a way that assigned blame.  He also said that “having unrealistic goals sets you up to feel like a failure.” We should make goals that are small, and attainable, and don’t require a totally lifestyle change in one day. After reading Kerri’s post re: the goal bingo card, I’ve been really trying to set attainable goals for myself and it totally works! I used to be one of those “Will run a 5k in 3 months or else” kind of goal setters, and that does NOT work.  I left that session feeling like my sometimes passive approach at diabetes is not only normal, but expected and fixable. 

The DOC crew at TCOYD in Albany, NY.  Phew, that's a very technical alt text for ya.
The DOC, representing at TCOYD.  Holy initials!

There were a few moments during some of the sessions that left me more than disappointed. One doctor told us that no matter what our cholesterol levels or blood pressure, if you have diabetes you should be on a cholesterol lowering med, and a blood pressure medication, to fight off any future issues. I can’t even describe how angry I was with this. I understand the theory behind prophylactic medicine, but that’s just overboard. Rawr. There were also two Physician Assistants who were giving a talk titled “The Latest on Pumps and Continuous Glucose Monitoring Devices”.  Their slides were outdated and had inaccurate information, and they kept calling the receiver of a CGM a “transmitter.”  Frustrating.  In plenty of cases, there was a need for some clarification.  And we, as members of the DOC, were happy to help clarify.  Education is key, and attendees weren’t the only ones who needed some info refreshers.

But speaking of needing a little education, I attended the session on health care reform to help school myself.  I just graduated from college for good, and so health insurance is a big deal to me right now. (Not only that, but I want to be a diabetes educator and so I like to learn about all aspects of diabetes, not just the medical stuff.)  Kriss Halpern, JD lead this session. I have to be honest - most of it went right over my head.  I never have and probably never will understand law, politics, insurance companies, or Japanese.  But what I did manage to catch were the main points of Halpern’s discussions.  Here’s my takeaway: 
  1. Dependent children are guaranteed coverage through their parents until age 26. This is the one that most directly affects me, and I have to tell you that I know from experience this is misleading.  Medical insurance is extended. Dental, vision, and prescription aren’t necessarily included.  This means that my dentist appointment last week was my last until I get my own insurance. It also means that my eye doctor appointments are covered, but only because they are considered medical necessity because I have diabetes, and I have to pay for my own glasses/contacts from now on. (Mind you, this is through my personal insurance, I’m sure the coverages vary from person to person.) 
  2. There are state and federal laws that evaluate insurance rate increases. This means that they can’t just raise rates because they want to.  Nice to see that kind of check-balance in place for once.
  3. The medical loss ratio. There is a percentage of money that is required by insurance companies to be spent on medical things. So for large group insurances they have to spend at least 85% of their money on medical, and not on salary, advertising, etc. This seems cool to me, but it might have been this way forever? Like I said, I do not speak Legalese.
  4. Annual limits will be $0 by 2014, and lifetime limits are banned.  This has something to do with the amount of money people are capped at paying out of pocket, I think.   Anyone able to clarify this one? 
Not all of this made perfect sense to me, and I now know that I have a lot of research to do, and a lot of questions to ask. This stuff directly changes my life, and my bank account. I need to be informed.  And sessions like Halpern’s help me know where to start.

The TCOYD team encouraged support groups, taking small steps to better your lifestyle, and most importantly, that we are not alone in this.  And that’s such a huge part of LIFE management, not just diabetes management.  Thanks to TCOYD for providing such an inspiring event!

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Thanks for attending this event, Abby!  And to check out coverage from last year's TCOYD conference in good ol' Rhode Island, you can read this post and this one.  :)

Comments

Glad to hear that there was something exciting happening in my hometown of Albany, NY! I was just there visiting a few weeks ago. Thanks for the recap!

Hi Abby -

It was good to meet you at the TCOYD. I also blogged about the disappointing CGM session on my quasi-defunct blog...

PS - I'm the one in the gray striped shirt next to Karen!

Abby! It was so great to meet you in person at TCOYD. (You too, Val!) Hooray for community!

As for annual and lifetime limits-- this is the amount that the insurance pays, not how much you pay out of pocket. For example, it used to be that if you were on an insurance plan and the plan covered $750,000 of your medical bills, then you reached your lifetime limit, or cap....and you (the patient) would have to pay everything after that out-of-pocket. The Affordable Care Act is ramping up those limits from $750K to $1M to $2M until 2014, when lifetime limits will be banned. Which is GREAT news not just for PWDs, but for everyone-- since we are all at risk for catastrophic events that require long-term care.

Hope that helps. :)

Nice recap!

Don't you love how the insurance folks' language shows how they really feel: "loss" is what they call medical care. Ah well...

Thanks for recapping! I really wish there was more information and resources of dealing with health insurance and T1 diabetes. I'm fortunate to have great health insurance now, but for many years I struggled with being un- or under-insured. While I was able to ensure access to insulin and basic supplies during this time thanks to my local Children's hospital (they covered me until the age of 24), I really struggled with being under-insured and fighting to get what I needed. Even now, I still occassionally have problems dealing with claims processing and other administrative BS. Teh problem is also that dealing with these issues can suck up A TON of time, thus taking time away from my productivity at work. Would be great if there was more help out there for folks like us who are just trying to get what we need to survive and still want some time left over to be productive members of society.

I am sorry to hear some of it was outdated...interesting about taking medicine you don't need...I don't think I will do doing that...Thank you for sharing your findings!

It's also important, when trying to find your own healthcare, to pay attention to the annual limits for prescriptions (it can be a whole different category). For instance, I was going to switch to another group insurance through my grad school, BUT then I noticed their annual prescription limit was $700. What?! I would blow through that limit within less than 2 months for all my prescriptions. However, I think, as a result of the Healthcare Reform, that those limits have already changed for SOME group coverages, because this same plan later amended that there was now "no limit" for prescription coverage for certain diseases, including Type 1 Diabetes.

First time poster here. Just wanted to say I share your surprise/anger about the recommendation to take cholesterol and blood pressure meds on a preventive basis.

I think this sort of statement illustrates the importance of being an educated, thinking patient and evaluating doctors' recommendations about your health with a critical eye. I've had Type 1 for 21 years, but consider myself fortunate that I inherited my mom's low blood pressure. I wouldn't dream of starting to take meds now, at the age of 39, for a condition that I may or may not develop at a later time. I think most people that already have a list of medication "musts" (like insulin) that they take on a daily/regular basis would be hesitant to add to the list with meds they arguably do not need.

Incidentally, this is also one of the reasons our health care system is in trouble and costs are so high. If you're sick, then by all means you should see a doctor and/or take medication, but seeking care and/or taking meds for conditions you don't have and may never develop doesn't make sense for the individual or society at large. Each of us needs to do our part in being a responsible consumer of health care.

It was my 1st TCOYD also and it was great! I am an inpatient CDE and always fighting for the best care of my fellow PWDs. I was surprised a bit by the outdated CGM slides as I know the reps visit us weekly at work and would be horrified... Has anyone else noticed a change in the cost of pump supply co-pays? Just found out we (at least in NY) can no longer be charged a DM supply co-pay higher than a specialist office visit co-pay. But as far as taking a statin drug and an ACE or ARB, those are the clinical recommendations and they've been out there for many years now. I balked at the idea of it when my old endo wrote out a script and handed it to me, and then crumpled it up and tossed it in the trash as soon as he left the room. Research shows that ACE inhibitors can help prevent diabetic retinopathy and nephropathy. As far as statins go, type 1 is an inflammatory disease and also leaves us with too many free fatty acids floating around in our blood; both of these things leave us much more susceptible to things like strokes and heart attacks. One of my former nursing instructors always said, "Diabetes = heart disease." It's as important to keep blood pressure and cholesterol in check as it is to keep blood glucose reigned in, & it is just best practice to recommend statins and ACEs. I know, I know... too many damn drugs.

Great review, very informative. Thanks.

Nice wrap-up. I think they will be in my area in October. Well - at least my state (still a few hours away).

I switched endos once because the guy walked in the room and prescribed an ACE or ARB without even talking to me. No thanks! I am not opposed to taking medication I need, but I will not take a medication just because everyone else is.

Abby,

Nice update and thanks.

Please read:
http://consumer.healthday.com/Article.asp?AID=653873

Since we all want to live a long and healthy life, and to do that we need to be activated and motivated about our diabetes, I urge you to ask your primary care provider and/or endo team to provide you with some research based evidence regarding statins and ACEs and reduction of diabetic complications. You could also read the ADA's Clinical Recommendations released every year in January, which comes with many references to investigate. There are many landmark studies out there that focus mainly on BG control & risk of complications, such as DCCT & UKPDS, but the research is there. I just heard about the VADT study tonight (cardiovascular events) at a program given by Dr. Helena Rodbard, which was a great privilege to attend, and I will be looking that one up as I am not so familiar with it yet. If I make it as a Joslin medalist (15 1/2 years to go), I want to still have functioning eyes and kidneys. Statins and ACEs/ARBs are not the only way to prevent complications of course, and will be indicated in some people earlier than in others. I took one injection a day per protocol as an 8 year old (regular insulin I mixed with NPH) and it was keeping me alive; today I use NovoLog insulin continuously infused through an insulin pump to replace the 5 daily injections I had "graduated" to as science changed over the years. Still keeping me alive, but now also preventing deadly and debilitating complications.

Abby, I'm so glad you got to attend a TCOYD event. They are among my favorites!

Fun to see some familiar faces in the photo too!

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