The FDA Disses Insulin Pumps

Amy Tenderich
By Amy Tenderich Latest Reply 2009-01-02 20:08:06 -0600
Started 2008-05-06 05:59:54 -0500

That big news story about how insulin pumps are dangerous for young people is baloney, and very damaging. For the scoop, see

Who is else is MAD about this?

22 replies

Anngelia 2009-01-02 20:08:06 -0600 Report

I think parents should be aware of the potential problems but I think the potential problems of daily injections are just as big a deal. It's a major illness so there will always be problems but the pump makes anything you to have to deal with so much smaller that it seems worth it.
I know there are those who still believe in a cure one day (I dont) but this is the next best thing.

Sparrow - 16557
Sparrow - 16557 2008-12-13 19:57:01 -0600 Report

I've been a pump user for… well, a VERY long time (over 20 years, back when the pumps were the size of small books). Yes, there is on occassion times when I may not get the insulin I need because of a site obstruction, etc. Pump users are TRAINED what to look for when their blood sugar runs high for no readily apparent reason. OVER ALL, I am in (and my blood sugars are under) MUCH better control than I was when I was taking multiple shots per day. I would say that the benefits of pump therapy FAR OUTWEIGH any negatives people may find.

NamVet - 21894
NamVet - 21894 2008-10-04 08:07:14 -0500 Report

Where do they get this stuff. Doesn't the FDA have anything better to do? Like stop letting bad vegetables come here from Mexico?
I think someone called who did not know what they were doing and the kid lied to his or her parent, so Mom or Dad said let's call the FDA.. Lordy now the idiots are in charge(FDA). That is a group we could use less of!

maryann40 2008-05-27 02:50:39 -0500 Report

I have been a diabetic for 34 years. I did have a pump from 2002 until 2006. I have never had better control of my diabetes and since it broke and I can't afford another I am back to where I was in 2002. While on the pump my eyesight got better (my eye doctor was thrilled), my weight was under control (I have gained 50 pounds since it broke), and I felt great.

The only problem with the pump, no one (state or federal) will help get you a new one.

I lost my job and my insurance and I don't have $5000 for a new one.

Sparrow - 16557
Sparrow - 16557 2008-12-13 20:02:34 -0600 Report

Try "". They have been know to furnish refurbished pumps to people who can't afford one. I know that using a "refurbished" pump may be a little disconcerting, but I had one of my pumps refurbished one time and it lasted for AT LEAST 4 more years (it may still be working somewhere out there) without ANY problems.

Pat Burton
Pat Burton 2008-05-19 17:15:17 -0500 Report

Anyone who watches a child travel around on a compputor should realize that they would understand how to use them better than some of us "older people". I find children very ready to use things like that intelligently if properly trained. Children who may be at risk, as their personalities are a little scattered should not be considered, but most I know of are capable. Pat Burton

morris.js 2008-05-20 23:11:00 -0500 Report

I used to be on a pump several years ago, and yes there are times when things don't work as they should. In my case, my body gave me signals that warned me of a problem, such as getting cold sweats and shaking when my sugar dropped too low. If the parent and child both learn all facts about the various issues of pumping, then by far it is the best way to go. I have seen way too many kids skip their injections because they felt uncomfortable taking them when they were with friends…even when slipping off to a private bathroom. The pump has solved many of those types of problems, and it did make even an adult like myself dose the way I was supposed to. Fortunately, I no longer require insulin, but if I did, I would certainly go back to my pump.

Charlie - 15186
Charlie - 15186 2008-05-12 08:03:42 -0500 Report

I've had a pump for over 3 years—-it is fool proof and succeeds in improving my life tremendously. If a grown up supervises a child, there should be no problem.

Charlie Fox

momoftype1 2008-05-15 12:45:59 -0500 Report

ok-so a mom of an almost 10 year old who has only been daignosed for a year and is interested in the pump-what does this mean for us-until this info everything I have heard was good news and the freedom that it allows-should we wait longer? Is there a right time or age? our endo said we could take classes and get the pump by the middle of the summer-any input form those of you who are experienced?

John Crowley
John Crowley 2008-05-19 05:11:31 -0500 Report

I'll share a little of our experience. My son was a little older than your child is now. We too had heard all the good things about the pump. Though it was expensive (even with insurance), we wanted to do whatever we could to help him.

We went to the class. We learned to count carbs like experts. We were so excited for the day to start the pump.

Then we went to meet with the nurse and our endo to begin pumping. We love our endo, but he walked in and dropped a bombshell on us. He said something to the effect that going on the pump actually increased our son's chances of ending up in the hospital with ketoacidosis.

We were shocked. He explained the dangers of blocked tubing, pump malfunctions, etc. He gave us some strict rules we had to follow. And admittedly, it was a little frightening.

Now it's been 4 years and our son has never been to the hospital with ketoacidosis. We've had some really high blood sugars due to some pump issues. But we've always been able to follow "the rules" and get things back in control. We love the pump and are glad we did it.

As Brooke points out, you and your doctor have to assess if your child has the maturity to take the responsibility needed to be on a pump. I disagree a little with Charlie's "fool proof" comment. It is not fool proof or auto pilot. The pump does make a lot of things simpler, but you also have to be aware of more aspects that can cause trouble.

I hope that's somewhat helpful information for you. Best of luck. Let us know what you decide.

momoftype1 2008-10-04 05:01:59 -0500 Report

I have been looking for this discussion for a few days-I just wanted to thank you for sharing with me. My daughter got the pump in august after many hours of class to educate us.

She has been pumping for a little over month now, and we are very aware of all of the concerns and dangers that go with the pump. AS a matter of fact within the first ten days she forgot to tuck in the tubing and it got spliced-no panic we just tested, got out all of our supplies and started a new site. We love the pump because she already feels like it is ok to go somewhere without a parent now. Like yesterday she went on her first field trip at school without a family chaperone.

The other wonderful news is the change that we have already seen in her A1C. In mid June she was 8.1 and on 9-22 with only a month on the pump she was down to 7.5.

I don't care about what the media has to say about the pump, our endo and family are huge supporteres, and it truly is about the difference between being vigiliant or thinking the pump is doing the work. We still have to put in the work, like counting carbs, adjusting the wizard when necessary and using the temp basal settings. The pump is only a tool to help just as diet and monitoring bs.


patycake 2008-12-08 07:33:13 -0600 Report

charlie,ive been wanting to try the pump,cause i cant get my sugar right and thought maybe with the pump i might be able to,but what ive read on here i kind of wonder now.the things ive read is kind of scary…pattycake

Sparrow - 16557
Sparrow - 16557 2008-12-13 20:11:17 -0600 Report

Really, the pump IS an asset. Like I say in a later response, I've been a pump user for over 20 years. You just have to do your BG testing like always. THAT is the key to good control, pump or not.

I've been surprised at the concern over ketoacidosis for pump users. The big concern when I was first put on the pump (and when I was placed on it again after my pancreas transplant) was hypoglycemic episodes. Because you are getting a "constant flow" of insuli, it is sometimes hard to tell when too much excersize or activity might drop your BG too low. Again though, frequent BG testing helps avoid that, too.

Don Hannaford
Don Hannaford 2008-05-09 07:02:13 -0500 Report

I'm a Type 1 (still prefer the pens, though), but my Type 1 daughter who is now 18, has had a pump for three years. Yeah, the pumps have problems, but isn't that why you wait to get one until your endo thinks you can handle it?

What really incensed me about the story was the prominence given to the "dangers" and then down further it says two kids tried to commit suicide with hyper-boluses. And how is that the fault of the pump? You could do the same thing with a vial and syringe.

I get John's point about the report having "cautionary tale" aspects to it, but this report was certainly (at least in part) designed for media consumption, and was bound to have on the negatives highlighted. I can't believe FDA doesn't have something better to do with their time (like reviewing drugs in a timely manner).

BrookeT 2008-05-08 05:32:26 -0500 Report

I am so incensed by this news I am shaking with rage at the FDA. I cannot believe how twisted they have made the pump. If you have uneducated teenagers running around with the pump then it should be the doctors in trouble. You cannot get a pump without a letter of medical neccesity and you have to get that from a DOCTOR. Did they compare any of thier stats to teens without pumps? I know of two teens that killed themselves by injecting themselves with too much insulin. Injecting with needles not a pump. I wanted a pump when I was 13 years old but my doctor made me wait until I was 16 because I was not responsible enough. Now that isn't to say that other kids aren't I just was not exactly a compliant teenager in any aspect of my life. I have a 23 year old brother with diabetes and there is no way anyone should give him a pump he is way too immature and is completly non compliant. Everything is a case by case basis and this study is damaging years of headway made with insurance companys and will potentially scare off doctors and potential pump users. My 8 year old got a pump when she was four years old and it changed her life and ours. If she becomes an out of control teenager? I will take that pump away. That is my responsibility as a parent. She doesnt' get to stay on one just because she has always had one. Oh and one final thought How many lives have the pump saved? I would guess hundreds if not more. Including mine and my husbands!!

BrookeT 2008-05-09 06:46:35 -0500 Report

Ok so I posted a link to the AOL article as well as a link to this post on my own website and I got a response from my cousin and my husband so I thought I'd copy her response (as a non-diabetic) as well as my response to her and finally my husbands response.

Katie and Tyler said…
I read the article and I think you are blowing it way out of proportion, but I'm not in your shoes. I agreed with John Crowley who said that it's not so much "dissing" the pump as it is making sure the risks are understood and pump maintenance and insulin is monitored closely. I hope that doesn't come across insensitive…I'm only stating how I perceived the article vs. your emotion.

Brooke said…
Geez Katie. So much for the sympathy vote huh. First off I would agree that this was probably the intent of the study. However, the insurance industry will take every opportunity not to pay for anything expensive. I have been fighting with the insurance company for the past year to get Tyler a Continuous Blood Glucose Monitoring System, a system which would alarm Tyler when his sugars drop to dangerous levels and we could potentially say goodbye to paramedics forever. There is a downside however in that people would abuse it by not testing (which is still required since it can be incorrect)these people would have several problems. It also took me two years of fighting with my insurance and filing appeals to get my last pump despite the fact that my pump was so old it was in the antique case at the diabetic dr's office. I'm just saying that there is bad to every good and when a powerhouse like the FDA puts out a statement like that it gives insurance companies a reason not to pay for it and it scares doctors into not recommending it for fear of medical malpractice. I just think that if an federal organization like the FDA is going to put out a statement it better be a well rounded statement will all sides being represented.

Tyler said…
Agreed, I just don't think people who live without the daily medical issues we do realize just how much weight a statement like this carries with the insurance industry, these companies now have the FDA saying that pumps are dangerous, now the insurance companies have one more reason to refuse the device to someone… it scares me, the insurance companies will do anything they can to save a buck and protect their bottom line, even if it is to the detriment of the very people they are insuring! I feel the FDA worded this release very poorly, but unfortunately you can't unwrite it, and it is us that will have to deal with the repercussions.

John Crowley
John Crowley 2008-05-09 07:07:15 -0500 Report

The insurance issue is immensely important. I too have had my struggles with them. I can definitely agree that giving them reasons to refuse to pay for treatments is a bad thing.

And I very much appreciate your point about the doc's and the parents sharing the responsibility to make sure the kids know how to use the pump properly and are responsible enough.

Hopefully the end results of all this are improved safety features and functionality of the pumps and NO insurance repercussions. (As you can see, I suffer from chronic optimism :-)

John Crowley
John Crowley 2008-05-07 08:59:21 -0500 Report

I agree that the media is sensationalizing this report (boy do they love "death"), but as I've reread the article the message to parents of kids using pumps is critically important.

We love the pump. It truly changed my son's life. But just like many other things in life, there are risks that come with the good.

Just imagine if it was your kid who slipped into a coma because he had a blocked tube and just kept bolusing. What if it was your kid who died because he ignored warning signs because he thought he was "safe" with the pump.

I think the big takeaway from this article is that just because the pump makes managing diabetes easier for parents and children, you have to remember that it's not autopilot. You have to stay vigilant every day.

That's just my 2 cents.

Amy Tenderich
Amy Tenderich 2008-05-08 12:47:50 -0500 Report

Sorry John, but that doesn't make sense to me. You have to be AT LEAST as diligent on injections -- the only way to ever know if you are getting too high or too low is to check regularly. Has nothing to do with the pump per se...

John Crowley
John Crowley 2008-05-09 02:48:28 -0500 Report

You are absolutely right that you also have to be diligent when you are on injections. However, the key difference as our endo explained is that when you take an injection, you know you got the insulin. When you're on the pump, there are many factors that could cause you to think you received insulin when in fact you didn't. A site that has gone bad. Air in the tubing. A malfunction in the pump. A canula that becomes crimped.

What they see, particularly in teenagers, is a tendency to continue to bolus insulin when they get high readings. The young patient just thinks all he/she needs is more insulin, when in fact, they aren't getting any insulin. In very short order, the kid is spilling ketones and getting in very dangerous territory.

Please don't think that I'm saying that I think this news story was handled perfectly. As I said, I agree that it has been sensationalized. But I also believe (as a parent of a child on a pump) that it is a good reminder that there are dangers to be aware of.

tmana 2008-05-07 08:14:03 -0500 Report

Even worse, the fear-mongering story has made the headlines on AOL Health

There is no way to comment back on this, and it is worded such as to make any and all parents think this is dangerous, experimental technology — all the while saying it isn't. This is SOOOOO being spun out of control…

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