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Diabetic Connect Member Colin Pye

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Insulin pens with memory, for people without one

by Colin Pye
September 16, 2009 9:43 AM
12 Replies
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Last edited 2 months ago

Things are often rather busy around here, and I have trouble getting a free minute or two to do my testing and take my insulin. As a result, it's not uncommon for me to be left with that terrible question, "Did I take the shot or not?", or that other terrible question, "Did I take the right insulin?"

I thought my worries were over when I found the Innovo device. I'd call it a pen even though it looks more like an overgrown pager or cell phone, but the company calls it a "insulin doser". It has a display on it that shows the last dose taken, and a clock face that shows how many hours ago it was last used, up to 12. it's easy to use, and lets me know that I either did or didn't do the shot.

Unfortunately, the battery has died, and there's no official way to change it. Even worse, the company behind it, Novo Nordisk, no longer makes it, and any that are still out there will not likely have more than a month's worth of battery life left. When I called their customer service number, I heard that there are a lot of people still looking for them, but their only suggetion for a replacement is the Novolin Pen 4, a unit without a "Did I use it" function.

I've heard about another pen that has a memory function, the Humapen Memoir, from Ely Lilly. It won't take the Novo Nordisk cartridges, so I'd have to change insulin to switch. My doctor is fine with that, and my latest script has one of the Ely Lilly insulins on it. The only problem is actually getting the pen -- .it seems there are more stories about why I can't get one than there are drops of water in the Atlantic ocean! I'll cover the ongoing details in followup messages.

I don't know of any other devices out there that have a memory function, unless you count the insulin pumps, but would like to hear about them. It seems to be such a useful safety-related function, I find it hard to believe it's not standard equipment by now.

To provide a little background, I'm located in Canada, (Nova Scotia, to be specific), and am reasonably technically capable. I rebuilt my first cell phone out of parts collected over 7 years, so I also have some level of patience, although perhaps a little more with machines than people. At least machines don't know how to tell lies.

Tags: insulin, pen, memory, devices

From Replies
Diabetic Connect Member Colin Pye
Colin Pye
Colin Pye replied September 16, 2009 10:42 AM 

My first attempt to find the Memoir was to call Ely Lilly Canada, and ask them about it. The person I was talking to said that they were not yet available at pharmacies, but I should be able to get them at the local diabetes center, my next stop.

I drop in to the nearest diabetes center, and actually see one of the devices. The nurse there tells me that all I need is a prescription from my doctor, and it can be mine! A quick visit to my doctor, and I'm back to the center, admittedly, the next week.

I wait for the nurse again, and show her my prescription. She tells me that she can't provide the pen because she doesn't have my records, and it would be unethical for her to do so. I press further, asking what she needs to get what she needs, and eventually one of her co-workers gets on the phone with my pharmacy, and I hear that I'll be able to get the pen there.

The pharmacy visit was a let-down. No memory pen. Apparently, someone else took the call from the diabetes center, and was "confused" for some reason. I resolve to start carrying a notebook, and to getting names, so I can hold the right people accountable, and can do the "But Blair said all I needed was...." thing.

Now I am stuck with a prescription for insulin cartridges that won't fit my existing pen. What to do, what to do... the pharmacist comes through and gives me a pen that will work, the Luxura. It looks and acts a lot like the Novolin Pen 3, but with a prettier case. At least I don't have to go back to a syringe.

A visit to the diabetes center where I had my initial training proved almost pointless. The staff there are shared between two different locations, and the people who had seen me before were at the other location that day. A phone call got me the news that while they had my file, I had been discharged over two years ago, and was now "off their books". Oh yes, they do have a closet full of the pens I was looking for, but it would be unethical for them to give me one, without training me on how to use it. The analogy they used was that it would be like giving an airplane to someone without a pilot's license. I pointed out that I was "already a pilot", that I have read the manual, and already know how to use an insulin pen, but that wasn't good enough. If I wanted to get one, I'd have to visit her at their other clinic, but not today.

In my frustration, I call Ely Lilly Canada again, I give their answering machine some idea of the runaround I've been getting. My soul is not yet crushed, I still have hope.

The nurse checked her schedule, and thought she might be able to fit me in two days later, around 2PM, and I should be prepared to teach *her* how to use the pen! However, the next day brings a series of phone calls, one saying that there was no way they could make room for me, another saying that their afternoon sessions were cancelled for other meetings. I ask if I could be slotted in earlier, and was told that "she'd see".

I had to take my parents to appointments and was on my way out of the door when I got the second call, so I gave her my cell number, so I'd be able to get her return call. Whoever called back didn't bother to use the cell number, never left a message, and didn't let the phone ring enough times for the call to bounce to my cell phone (Call Forward on No Answer really can be your friend). I got one ring on my cell, and the call was gone before I could answer.

The hospitals in this area have a global policy of blocking caller ID. They claim it's to protect patent's privacy, but I think the real reason is "plausible deniability" "Yes, sir, we did call back, 3 times, and no, sir, we weren't those telemarketers trying to sell you an extended warranty on your DeSoto automobile.:" At least most of the other medical professionals don't do this, unless they are calling from a hospital location, where they have no choice in the matter.

The next morning, I visit their other location, and get told that they might have an opening two weeks away. I'm glad that I have the other pen, one that I haven't been taught how to use, for the meantime.

get told that the Memoir has not yet been approved by Health Canada, making it illegal to distribute in this country, although they are distributing it through the diabetes centers! This is over two and a half years after it was released in the US. I also get told that they do not condone cross-border shopping, and cannot recommend that as a method of getting their device to use their brand of insulin. A later followup tells me that the device has been approved, but they don't know when it will be available in pharmacies.

At this point, I''m giving up, at least for the moment. I have an Innovo with a totally dead battery, and some screwdrivers. I have dead ends from Novo Nordisk and Ely Lilly, the pharmacies, and the diabetes centres. And I have learned that "customer service" is just another word for "Make them go away, and we don't give a rodent's rump if they are happy or not.".

Gabby replied September 16, 2009 12:06 PM 

What a nightmare. Geeze....you would think if something is so helpful they would continue it. I loved the title of your discussion as I thought it might give me hope to help my mom who is 75 and takes insulin. She is lucky, it's only one shot per day, so for now it is not so bad, but we all know our bodies play mean tricks on us, and I am sure it will be getting the best of her eventually.
Please keep us posted on what you find out. And good luck!!

Colin Pye replied September 16, 2009 2:05 PM 

Your mother certainly would benefit from one of these devices. Failing all else, the display is easier to read than the dial on current pens, and where it does record the last 16 uses, you can check to see that she has been getting her medication in the right dose and on time. It records all uses of the pen, so you can even tell if she is doing the "air shot" before her injection.

Also since my last post, I found out that the Innovo pen uses a battery that looks like a CR1616, and they spot-welded it into the device. It;s also possible to take apart the device far enough to access the battery without the use of a hammer, and without breaking it into way too many little pieces

As far as battery replacement and reassembly, those are still two questions I have yet to answer.

kdroberts replied September 16, 2009 12:48 PM 

Since the pen is actually just a container you should just be able to buy it from a pharmacy or maybe even directly via Eli Lilly. It seems you have no issues with the cartridges which are prescription so that's no problem. Maybe give Eli Lilly US a call and explain what's going on. They have a free offer on their website for the pen and if you tell them you have a script for the insulin but no way of using it they would probably be happy to send you the pen so you can buy the insulin. The offer is good in the US only but I wouldn't give up hope until you have at least spoken to them. 1-800-545-5979

Colin Pye replied September 16, 2009 2:18 PM 

Thanks for that number! I've just spent half an hour on the phone with an Ely Lilly rep, but don't really know if I made any progress.

She really became attentive when I mentioned "missed doses" and "double doses", although I got the impression that she thought it had something to do with the insulin cartridge. She wanted the lot numbers from cartridges where the problem had happen in the past!

After confirming that she was a parent, I described the problem in more detail: Have you ever been doing something that requires a lot of concentration, and then one of your kids runs in yelling "Mommy! Mommy! Billy just ate a worm!" It seemed to get the point across.

She didn't say anything about the free pen offer, but did take my name, address, phone number, shoe size, bowling average, and current underwear color, to pass on to her health and safety people, and said that I might possibly be hearing from them. I also suggested that I might be useful if they were looking for further improvements of the device, but I really didnt get a sense if that went anywhere or not.

I did see a coupon on their web site before, but I thought it expired at the end of '08. I'll have to look afain, and maybe give them another call. I might need to make a little trip to Maine, or see if I have any relatives who are going to be heading States-ward in the near future.

kdroberts replied September 16, 2009 2:59 PM 

Here's the coupon. It's US only so you would need to get a prescription that a US pharmacy would accept. It's good until the end of the year. The bottom line is that they want you to keep on using their insulin and keep their revenue stream up so they should help you get the pen to be able to do that.

http://penvoucher.humalog.com/combined.cfm

Colin Pye replied September 16, 2009 4:17 PM 

Hey, guess what?

The lady I was talking to at Lilly called back! It seems that her health and safety people were concerned enough to ask if it was their own product that was involved in accidental usage errors! Now if only they were concerned enough to do something to reduce the chance of it happening again. They do have my name, address, postal code, and phone number on file now, so there is a slight chance that something good might possibly happen.

Oh, and as an added bonus, she knew absolutely *NOTHING* about the coupon offer, but she did take the link, and said that it sounded like the real thing. I asked if I paid the courier charge if she could send me a pen, and she said no, they couldn't do that. Stupid me, I forgot the words, "Professional Samples"!

kdroberts replied September 16, 2009 5:05 PM 

Hopefully you will get something out of all the work you are putting in!
Diabetic Connect Member Avera
Avera
Avera replied September 16, 2009 10:11 PM 


Hello!

There are a few online stores that sell almost every kind of battery known to man. The only thing that you have to do is find a way to open your device so you can get the battery information from the battery. If you cannot get it open,,,,call the company that made it and have them to tell you how to do it.

THEN*****

Go to one of these sites and find the battery that you need:

Batterylink.us
Online shopping from the earth's biggest selection of replacement batteries and chargers, High Quality Guarantee, Best Price, Super Quick

http://www.batterylink.us/
*************************************
Low Cost Batteries
Your online battery superstore. We have replacement batteries for your camcorder , laptop, ... PDA devices, watches and more.

http://www.lowcostbatteries.com/
************************
Battery Specialist, Inc.
Online battery store offers replacement batteries for laptop and notebook computers, cell phones, cordless phones, camcorders, portable radios as well as many other devices.

http://abatterystore.com/commerce.cgi
*****************
Hope this helps you.
Avera

Colin Pye replied September 17, 2009 2:25 AM 

Last edited 2 months ago

I've found out what the battery is, a CR1616. That means it's a lithium battery that delivers 3 volts of power (the C part), is round (the R part), and is 16mm across by 1.6mm thick ( the 1616 part). I bought a package of two earlier this evening for $1, plus tax.

The company that made the Innovo says that the battery is not replaceable, that one is supposed to replace the entire device. They have no interest in end-users replacing the batteries, and actively discourage it.

The company that made the Innovo considers it like a pacemaker, a piece of medical equipment that should not be opened, repaired, modified, enhanced, or tampered with by anyone. Legally, it's a safe and very understandable position for them to take, since they have some liability for a malfunction of their device. They also expect that by the time the battery fails, the gears and other internal mechanisms will have worn to the point where replacement is a good idea. The only thing, they decided not to make a proper replacement, but to offer a poor substitute with reduced functionality.

The designer's biggest fault was not knowing that their company would abandon the product, rather than continuing to develop and enhance a product that clearly had a lot of time and effort put into it's development. I can't fault them for that any more than I can fault the designers of the digital display pregnancy test for not making the battery replaceable in that product, something that's clearly made to be used then discarded.

No, battery replacement is not a good answer to the problem. Not only does it push the device beyond it's design limits, it continues to help generate money for a company who has not done the right thing for it's customers by providing a suitable upgrade. I'm afraid I'm at a loss for a suitable analogy, but I am reluctant to generate revenue for a company that does not appear to value my opinions, needs, or desires.
Diabetic Connect Member Colin Pye
Colin Pye
Colin Pye replied September 18, 2009 8:22 PM 

Woohoo! (although I likely shouldn't get that excited until I get things confirmed and learn more...)

Yesterday, I dropped in to the Canadian Diabetes Association's local offices, and asked about pens. They had a huge array of meters, test strips, needles, infusion sets, and other stuff, but no pens of any form. It wasn't a wasted visit, though, because I got a phone number for their local Ely Lilly rep.

It was too late to do anything by the time I arrived at home, assuming that the number was for a person who works normal hours, so I didn't call right away. I got a call about some other supplies, and the pharmacy technician told me that she heard that the new pens would hopefully be available at the end of Fall. I pointed out that would be almost the end of the year (I checked just now, it would be December 21), and was given an "Oh, no, some time in October". Still it reminded me of the other phone number.

Less than an hour ago, I called the Lilly Rep's number and left my contact information on the voice mail system that seems the only way of getting through to individuals these days.

I got a call back! We went over the background, what happened with my DEC visits, the unavailability of things at local pharmacies, and all the rest of it. Things were not sounding good, until I mentioned that I had heard some doctors were rumoured to have the pens available. He knew the specialist I had seen by name, but I am "no longer on her books", I asked if there was a way to get my doctor on the list of those with pens, and, after getting my doctor's info, and finding out that my doctor was in the same building and one floor away from the specialist's office, he said he'd ask her rep to drop off some pens to my doctor!

Of course, I'm not going to believe it unitl I see it, but things sound hopeful.

kdroberts replied September 19, 2009 1:14 AM 

Good deal. It seems crazy to me that they don't have a supply of the pens that is easy to come by and give out for free since you only need 1 pen for a pretty long time and the cartridges are the part that makes them money and need the prescription.