Award and Medicare

Well, I’ve had a couple of good days. First was the email Thursday that Tourist Trap was a finalist in the Reader Views Literary Awards. Yes, that’s the same one Homecoming received last year.

Then I got a phone call from the clinic saying the box of replacement sets had arrived, and I picked them up Friday, thus ending a very nervous couple of weeks.

Replacement sets?

The other end of that plastic cord feeds into me.

I use an insulin pump. It’s about the size of a small stack of business cards, and it normally lives in my pocket. It contains a reservoir of insulin, which theoretically should be changed every three days. (I normally average about six, because that’s how long a full reservoir lasts me, and I have yet to see any drop in effectiveness after six days at body temperature.) The pump gradually pushes that insulin out very fine tubing a couple of feet long to a set, which is fastened to my body by a piece of adhesive and has a fine Teflon cannula piercing my skin and delivering insulin into the subcutaneous tissue. The set has a needle which is used to insert the cannula under the skin, and is then removed. The set has to be changed every three days – any longer than that in the skin, and scar tissue starts to build up and insulin no longer gets through. These sets are not reusable; in fact they become medical waste.

I’m lucky to have very good supplemental insurance as well as Medicare, and every 3 months I get shipped 30 sets. A couple of weeks ago the shipping company called me to check how many sets I had.

“Two. When are you going to ship them?”

“We did, a couple of weeks ago.”

I have them ship to my doctor’s office, because in my experience mail order pharmacies never adequately package temperature-sensitive medications being shipped to regions where 40-below temperatures are common, and in some shipments I get continuous glucose sensors which must not be frozen. So I called the clinic, which usually calls me when a package arrives for me.

They couldn’t find the box.

By that time the pharmacy was closed, so when I called back the next morning I got the details of the shipment. They insisted it had been signed for at the clinic and gave me the exact time and date of delivery.

I called the clinic back. I think it took about a day before they finally said that yes, they had received the box. The person who signed for it remembered it. So did several staff members. But they couldn’t find it, and they’d looked everywhere. They said they’d call the mail-order pharmacy back and pay for a replacement shipment. (This is stuff no local pharmacy carries.)

The mail order pharmacy said that Medicare rules did not allow them to send out a replacement shipment – never mind that it was the clinic, not me, that verified I had never received the sets that are essential to my life, or that the clinic was willing to pay for the replacement shipment.

The clinic combed the offices of the doctors that treat diabetes, and managed to come up with a few sets to tide me over. They also called the pump (and set) manufacturer. The manufacturer FedExed me a few more sets. Finally, Thursday, the clinic called and said they had the sets from the manufacturer, and I picked them up yesterday.

I realize that Medicare does have a huge fraud problem. But in this case the clinic was offering to pay for the lost shipment, so what kind of fraud did they think was involved? It’s not as if the sets were valuable to anyone else, but they are life or death to me.

Measuring Blood Sugar

Back in the middle of the 20^th century, long before I had diabetes or even thought much about it, I saw a magazine ad that talked about diabetes. It might have been an insulin ad. What I do remember was that it featured a Russian troika – a three-horse hitch – and likened controlling diabetes to driving a troika. Three things have to be balanced: insulin, food and exercise, and misjudging any of the three can throw you to the wolves.

That balancing act is hard enough today, with all the tools we have to help. It was a lot harder 42 years ago, when I was diagnosed. And I hate to think of what it must have been like at the time of the ad.

The key is being able to keep track of your blood sugar. Really high, and you need insulin – exercise may actually push you higher. A little high, and aerobic exercise may bring you down. Too low, and you need food, preferably fast-acting carbohydrates. But at the time of the ad, measuring blood sugar meant several hours of lab work, and you might hear back from the doctor the next day. In order to utilize food, insulin and exercise optimally, you have to have some idea of what your blood sugar is right now, and whether it is rising or falling.

There are some symptoms. Sweating, shaking, blurred vision, and tingling lips can all be symptoms of low blood sugar. They can also be due to other things. (I was put on hormones at menopause primarily because I could not tell the difference between a hot flash and low blood sugar.) But those symptoms tend to decrease with years of living with diabetes.

Symptoms of high blood sugar are even subtler. I may start feeling a little odd when my blood sugar is three or four times normal, but my feelings were certainly not enough to tell me when I was high. Anyway, in those days doctors normally prescribed a fixed amount of insulin and a fairly rigid diet, and pretty much ignored exercise.

My current glucose monitor

What was desperately needed was a way for diabetics to find out what their blood sugar was, preferably without slashing their fingers with a modified razor blade. (That’s how they used to get blood samples.) Eventually, and over the initial objections of some physicians and regulatory agencies who were afraid that patients would self-treat, glucose monitors were developed. From the point of view of most diabetics, the objections were just plain silly. We have to treat ourselves. We give ourselves shots of insulin (which cannot be taken by mouth because it would simply be digested.) We exercise. We eat. Doesn’t it make sense that the more we know about which of the three we need, the better?

The first monitors were reportedly large, clunky and slow. They improved rapidly, and by the time I got my first one, in the late ’80s, they were pocket sized (if you had large pockets.) My testing kit today fits easily into the belt pouch I use as a purse. I still have to poke my fingers many times a day, but I get results in five seconds. One important thing is not covered, though – I can’t tell whether I’m going up or down from an instantaneous reading.

There is also a problem of expense. Tight control means testing before each meal, at bedtime, before you drive, regularly during driving, and every 20 to 30 minutes when exercising. Test strips are not cheap, and there is a real problem getting insurance companies to cover enough strips.

I’m not the only person with diabetes to feel this way, and there’s been a good deal of research on continuous glucose monitors. The first one I tried was the glucowatch. This used a patch sensor on the arm or wrist, and gave the blood sugar on the “face’ of the watch. It could also be read by a computer. Drawbacks? Many. First, it would only operate for 12 hours, and took a while without readings to initialize. Second, the patch was very irritating to my skin. I invariably had a major welt that lasted a week or more when I removed the watch and patch. Third, any sweat made the readings unreliable – and sweating is a symptom of low blood sugar. The watch did confirm that I was having low blood sugars at night and that I responded by “bouncing” high – a fairly common reaction, and much better than staying low with possibly fatal results. But the combination of problems led me to stop using it.

Modern continuous glucose monitors are much better, though by no means perfect, and I’ll talk about them, and the problems with getting insurance companies to cover them, in the future.