Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Monday, August 28, 2006

The Newest Rumour on the Block - CGMS and Insurance

So the rumour I've heard is that there has been a few, perhaps few and far between, yet still a few insurance companies that have in selected circumstances, actually covered CGMS systems.....And today this has me completely freaking out, because I swear, by all that is holy, mighty, and all that junk, that I WANT one of those CGMS systems. I mean, I'd prefer one of the minimed variety, solely for the fact that I've always had minimed pumps and I know and trust the company, but I would take the dexcom in a heartbeat if I could convince my insurance companyto help cover it!

I actually spoke with my current endocrinologist last visit about getting a CGMS system come the beginning of next year as I'll have some money put away and I was thinking of doing it out of pocket. She, however, was not quite as excited as me and was not even close to signing off a prescription for a device that I fancy has the ability to CHANGE MY LIFE! She is of the variety that feels that perhaps the CGMS will do more harm than good for an aggressively treated type 1 as they will have TOO MUCH data to work with....I can see her point, but she's crazy....I can never have too much data. I poke my fingers upwards of 20 times a day. Ive designed complex logs to track everything you can humanly imagine tracking, well outside of glycemic index, although, that IS an idea.......

So her less than exuberant reaction to my desire to have one of these systems, combined with a few other problems Ive had with her office, has me thinking, that perhaps, more thank likely, it may be time to travel on up to the big bad twin cities to seek out a doctor who doesn't think that the best treatment for high variability,coupled with a TON of lows (and reduced ability to even feel those lows) is aiming to have my blood sugars between 130 and 170 at all times.....I want someone who isn't afraid to be aggressive, is willing to try new things (like using Regular insulin at dinner time rather than a square bolus to try and cut out some nasty lows I have been having...just an idea, may not work, but it MIGHT work, and if it does, isn't it WORTH IT?)and agrees 100 percent with me that CGMS is my ANSWER in helping to reduce low blood sugars and to address my reduced hypoglycemic awareness before it REALLY becomes a problem.

Ive had a few other problems with this office that have also got me thinking about leaving the clinic, doctor, team there. First of all, this is the ONLY endocrine clinic in Saint Cloud. And if you try to get a good appointment time, good luck, these doctors don't like to work before 9 am or after 4pm.....I guess that is true of most doctors though....I also fax in my sugars to the clinic weekly. Each time I fax in my sugars, I send them to one L's attention. I send them specifically to her because my doctor instructed me to send them to her because she is "most qualified" in her opinion to deal with pump/symlin patients. Well the lady never calls me back! A diabetes educator DOES call me back, but it is NEVER her and it is a different person every week! I have no continuity of care! How can you know what to change if you have no idea what we changed the week before, or what my goals are? or that the reason my blood sugars are 160-170 every day between 3 and 4pm is because I want them there for pre-exercise or pre-run? (I don't want them lower!) This malcontent list goes on and on and on....

My fear of lows can at times be pretty overwhelming, and the lows I have can be pretty frightening, feeding my fear of them. They are not frightening because of what happens when I am low, they are frightening because of how darn chipper I feel with a blood sugar of 35.

Ive considered getting a dog that is trained in sensing hypos, but a small 2 bedroom apartment is not an ideal situation for a dog + me + 2 crazy kids. Ive applied for the University of Minnesota Islet Transplant program, and have progressed to the point where I am to send in a thousand medical records and letters from my doctors, but have put that process on pause, at least for now, trying to see what else I can figure out before I go there more seriously than I already have. What I really really want is that low alarm. I want to sleep through the night, if only for one night.

Well, on that note, and with all the thought and excitement I have been putting into this the past few months, hearing that some insurance companies, albeit rarely, are actually covering these systems, Im ready to go for it. I am ready to appeal, appeal, appeal if need be, but I need a team that believes this is right for me to do it. So Im switching doctors. Ive decided, for now, on Lisa Fish at the International Diabetes Center in the twin cities. She wrote in her bio that she is very interested in helping to aggressively treat diabetes with insulin pump therapy. That sounds right up my alley and Im hoping she is the type of progressive doctor that is willing to take chances. Not dangerous chances, but Im the first one to step forward and do this type of chances....I mean, it is only my life, and I only get to do this ONCE, and I want a doctor and team that wants this life of mine to have quality and be outside of excessive restrictions and fears.....

So, I guess, wish me luck! Im sending in my self referral tomorrow and hopefully this week I'll know when my first appointment with her is....I'm nervous, but Im ready....


Scott K. Johnson said...

Hey Sarah,

I've heard good things about Fish, but have never seen or met her myself.

I think that finding a good doc is a lot like finding a good partner - you may have to try a lot of them before you find someone you "click" with. But good for you for being aggressive with it and looking out for number one. Too many of us would be content with settling for less.

I too am very interested in the CGMS systems, but just can't afford them yet. We'll see how it all shakes out in the next couple of years I guess.

How has the process been at the U for the islet cell transplant? Do you still have to take the anti-rejection drugs for that?

I've considered looking into a full blown pancreas transplant, but am just kind of scared by the whole thing. I would be interested in talking with you more about this to see what you have learned so far.


Sarah said...

Scott, I went through the initial screenings at the U of M for the islet transplants. I am now at the stage where various doctors of mine will basically verify through medical records and their personal opinion the initial information I gave the U of M to get past the first two pre-qualifying stages. I also need to send in one months worth of blood sugars and insulin intake, and this helps them verify I am taking less than 50 units of insulin a day, among other things to help verify the number of lows Im having per day/week and I also have additional hypoglycemic worksheets to fill out. I chose to not go this extra step because once I decide to make a big deal of the problems Im having with hypoglycemia (although it is a huge deal for me) my doctor will take me off the symlin. I really am not prepared to go off a medication that has greatly helped me with PP sugars for a "maybe, in a few years, perhaps, if everything goes just perfect" solution. Im not willing to give up control for that time period. So I decided that for now an islet tranplant probably isn't my best option, but it is something that I may look into as I exhaust other options. When I was looking into islet transplants, I was pretty much okay with having to take the anti-rejection drugs even if I only got a few years of insulin free life. I thought/think of it as my get out of jail free card, even if I end up having to go back to jail! I imagine things I could and would do if I were not insulin dependent. Ive never had dreams like this, since diagnosis, and pursuing islet transplant gaveme that dream. Like I said, I haven't completely given up on islet transplantation, but for now, Im not willing to give up my current treatment options for a maybe. I guess that probly means Im really not ready or needing that transplant yet?