Broken Trust and the Million Dollar Question

Monday, July 11, 2011

When your child is diagnosed (or you are diagnosed) with Type 1 Diabetes, you are forced to put your trust in other people and in other things.



You trust that your insulin is potent and free from harmful chemicals.

You trust that your supplies are clean and not contaminated with bacteria.

You trust that your strips give you accurate readings.

You trust that your insulin pump will properly deliver insulin.

You trust that your pump company will be there for you if you have a problem.

Or you HOPE they will.  You hope they care about the health and safety of their customers.

Many of you read what happened on The Scariest Night of My Life.

I got lots of questions... What happened?  Was it the pump?

The simple answer is:  I don't know.  I'll probably never know.



Here's what I THINK...

I think there was something wrong with the pump.  I think it was leaking insulin.  I think that caused the cap to loosen which brought on the warnings that it was not primed.  I think that this caused the high bg.  I also think that somehow after we reprimed it (even though she was disconnected) that it delivered more insulin than it should have.  I think maybe there was an occlusion but due to the leaking cartridge it never alarmed and finally it pushed through WAY more insulin than it should have. 

As I said in the post The Choices We Make, The Risks We Take, when you use technology you have to understand that things are going to happen.

And while what happened was awful, I'm not going to say that the Animas Ping insulin pump is a terrible product or is unsafe.  An insulin pump is technology.  And with technology comes risks.  I understand this.

However, what made me FURIOUS with Animas was their reaction and response to what happened.

In the hospital, the RN/CDE we were working with called Animas.  She sat in Sweetpea's hospital room and went thru the pump with Animas.  She checked it out and thought it smelled strongly of insulin - like there had been a leak.  She went thru the pump and all the alarms and settings.  She asked Animas if there were any recalls.

They said NO.

They said the pump was fine.  They said the severe hypoglycemia had nothing to due with the pump.  According to them, it did not malfunction.

The ONLY reason we got a new pump was that she told them our buttons had worn off writing.  And because the pump belonged to a child who relied on others to handle her care, that was dangerous.

We went home and J got online and searched for Animas recalls.

And guess what?  There was a recall on cartridges.  They were leaking.  Here's what the letter Animas sent to those with affected cartridges said: 
"...can leak insulin, resulting in the delivery of less insulin than intended. In addition, if the cartridge has a leak, the pump may not alarm if there is an occlusion in the infusion set."

But we didn't get a letter.  Nor did we read it about online.  (We TRY to read all the blogs but some days it's harder than others and we miss things!)

Anyway... eerily similar to what happened to us.  Even though we had none of the recalled lots.

So we called them.  Thinking they would want to know.  Thinking they would want the cartridges.  Thinking they would want to look into it.  Not quite.

They said there was nothing wrong with the cartridges we had.  Ours were fine.

I said that it was quite a coincidence and I didn't feel comfortable using them.  I wanted to send them back and get them replaced.

They said we could send them back but they were not going to replace them.

It wasn't until J said we'd be looking at other companies when our warranty was up when they finally agreed to send us new cartridges.  And we're only talking a couple of boxes.

The plan was that they would send us new boxes and include a label we were to use to return the cartridges to them.

But the cartridges never came.

Letters did, though.

Over the next couple of weeks, we got letter after letter after letter - at LEAST 5 - telling us to send them their cartridges.

We kept thinking they'd be here any day...

Finally J called.  It turns out there was an error and the cartridges were never shipped.  Ooops.

To say that I am upset would be putting it mildly.

I am upset.  I am angry.  I am disheartened and possibly most of all... I am EXTREMELY DISAPPOINTED.

My trust has been broken.



And it ate at me.  I felt trapped.  Stuck with a Animas.  A company I had no trust in.

Some people have had Animas pumps for years and have never had an issue with quality or customer service.  Unfortunately, I am not one of those people.

How can I trust our supplies are ok?

How do I know there isn't someone else out there who had a problem that could possibly impact Sweets but we were never informed because Animas said everything was fine and never looked into it?

I can't.

Let me be clear.  I like the Ping.  I think it has some wonderful features.  I will not try to talk anyone out of it.  Picking a pump is very personal thing.  It's all about what works best for you or your child with your lifestyle and your priorities.  NO pump is perfect.  ALL technology has the possibility to malfunction.

But it doesn't change my feelings.

My issue is not so much with the product itself but the way we were treated when we had a problem.  My issue is with the lack of concern.  The lack of interest.  The way we were dismissed. 

So, the Million Dollar Question is...

Should we stay or should we go?

Are we sticking with Animas?

Or not?

The answer is....  NOT.

And to find out more, come back tomorrow!



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38 comments:

  1. Oh, Hallie. I'm so sorry they handled it so poorly. : ( A company is only as good as its customer service. I will say Medtronic has been good to us, and any time our pump has alarmed (and I've freaked out) (which has been at least 6 times, I've lost count!), they've overnighted a new one to us.

    I don't care who you go with, I want you to trust your equipment. I know how you feel. : ( I've had my trust broken over something else, and it's SO hard to earn it back. : ( Hope you found an alternative for Sweets. Sending hugs, girl!

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  2. It would be so hard to trust again after such a scary experience! But Way to leave us hanging!!! ;)
    I'll be back tomorrow!

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  3. I think it is horrible the way you were treated. How dare they tell you it wasn't their fault especially when they didn't take the time to investigate it! I know what a hard decision it must have been to decide to stay or go. But ultimately it's your decision & as long as your happy & at peace with it; that's all that matters! So, congrats on your decision! So, is it Medtronic or Omnipod!?!?!?

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  4. I totally understand. Its not the product but the service. The way you were treated. This isn't a car part. Its a product, a medical device that keeps your little girl alive! I am so so sorry that you were treated that way, and I too would probably being going elsewhere.

    Thank you for sharing. For your honesty. Can't wait to read the next part of this..

    Xoxo

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  5. Thanks for sharing your experience. We've been very fortunate to have had good experiences with Animas during the past few years, but I would feel exactly the same as you having been through all of that. It's scary to me that they completely dismissed you and didn't even want to look into the cartridges you had in case they were bad and they just hadn't gotten any reports on that lot yet. I look forward to hearing more about which company you'll be going with now! And I certainly hope your experiences with the new company will leave you with feelings of trust and comfort!

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  6. Customer services makes a HUGE difference. I'm so sorry to hear that. I would be BEYOND upset. I'm a Medtronic fan and have always had amazing customer service from them--just my 2 cents! :)

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  7. Hugs, Hugs and More Hugs!!!!
    I've only known Animas. I'm grateful no major issues/problems. CS and Sales have always been good to me...

    But this makes me MAD. Never dismiss a customer for any reason, ever! Maybe the CS people you dealt with will get fired; in this time, that is very mean of me to say but what the heck?!

    Whomever you chose, hoping for great service and gaining your trust back. Good luck!

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  8. Earlier this year (I want to say in February?) we got a letter via U.S. Mail describing the recall, but that was after I had already read about the cartridge recall repeatedly throughout FB, Blogs, and Twitter updates.

    I hope diabetes technology companies far and wide take note, and remind their customer service staff how important it is to avoid placing blame on the "customer" and, instead, act quickly to resolve the situation and provide the support needed.

    As for us, we haven't had a reason to be upset with Animas and maintain confidence that the Ping is the best pump choice for our daughter.

    Good luck on your new journey, and I hope you have found the peace of mind you need to move forward.

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  9. Totally agree that it's horrible that you all were treated this way. That's unacceptable, no matter what device or technology a company has and how loved it may be otherwise. One of the downfalls of some of these places (sadly, most these days) is that there's too many departments doing too much and they don't talk to each other. I've found that with so many, but sometimes you find the people who actually step outside their little cubicle and do what's needed. Can't blame you at all for leaving Animas. I'd likely do the same in that situation. Looking forward to reading about what's next... best your way, to you and J and of course Sweets.

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  10. I have refused to use products far less important than this because of the way I was treated. I don't blame you one bit.

    I have had good luck with their cs so far, but the only issue I have had is with the remote and thats tecnically a different company. Animas was helpful(or concerned) though because there was an "incident".

    I hope you are happy with the new company. All the pumps a good... no matter which one you choose :)

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  11. Trust in a KEY component in D-care. If it is missing it throws off the delicate 'balance dance' we all spend our days trying to achieve.

    Hang in there and TRUST your gut!!!

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  12. There are a few things that jump out at me regarding this post.

    1-Seizures are awful. People with D1 have seizures every day. It does not mean anything was wrong with the pump or its parts.

    2-You are making some pretty deep accusations. As an advocate, especially given your relationship with JDRF, I don't see how you can continue getting free trips to Washington DC through them claiming to support the Artificial Pancreas when you blatantly make statements that the company they have contracted to work on it cannot be trusted. Certainly JDRF knows the company inside and out, much better than you do...and they felt Animas was worth the investment.

    3-If your intention is to support the community, you have not succeeded here. If you truly cared about your readers, you would have posted the lot number you question so they could check their supplies. Instead you have used this as an avenue to gain more attention for yourself. I think you have shown a spiteful side to your personality.

    4-I think it was reasonable for Animas to wait until you returned the cartridges before sending you new ones. That way they could investigate them to make sure they weren't sending you more supplies from the same lot.

    5-Be careful out there. Social media and the relationship bloggers have with BigPharma has come a long way. Posts like these will likely cause them not avoid association in the future. Poor timing on your behalf considering the past 2 weeks of big conventions all over the country where bloggers have been featured.

    6-Good luck with whatever is next. Hope they read this post and steer clear.

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  13. Anonymous, I'm not sure how you were able to post as such [anonymously] however, if you yourself are going to make such inflammatory remarks about the blogger maybe you should also have the guts to do so with a name. Unlike you, the writer is not hiding who she is at all. Other than that all I can say is maybe someone needs to take a phrase from their childhood: if you don't have anything nice to say, don't say anything at all.

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  14. I am sorry you felt you were treated badly... that never feels good, especially when it comes to such life and death situations with our kids. I hope you can find the trust again that your little cutie will be taken care of. And thank you for your honesty and sharing your experience. Sharing the good WITH the bad helps keep these very important companies in check and honest. The good companies should WANT to hear about things when they go badly so they can try to improve their processes and procedures.

    Fortunatly, we too have had nothing but good experiences with Animas. We were included in the recalls earlier this year as we had some of the affected lots. Both my husband and I got emails, followed by letters in the mail, and were promptly sent new cartridges without ever having to ask for anything. I also read about it on fb, blogs, etc so felt well informed. Your experience does sound eerily similiar to what they described in the recalls and I hope you did get to finally send back your cartridges and Animas got around to investigating them.

    Good luck!

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  15. I don't ever get involved in confrontational comments left by others but found myself unable to let this one go. The above post is a very strong comment to leave anonymously. Each is entitled to their own opinion but why hide behind anonymity if you have such a strong one? The import of your words are lost if you cannot even put your name to them.

    Hailie shares her truth and honesty with her name attached to it. That takes integrity.

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  16. WOW Anonymous! Who are you that you would make such strong accusations and not be willing to post your own name?

    I have found Hallie's documenting of her experience to be very fair. Having worked in medical device for almost 10 years, I know it is very difficult to know why a product fails. But especially for a life sustaining product the safest approach for the company would be to assume the product is at fault and to support the customer through a terrible experience. Had Animas been more supportive in taking the pump and cartridges back immediately for investigation, I would wonder if this post had even been written.

    And finally, I don' t believe Hallie writes her blog to gain a relationship (financial or otherwise) with BigPharma or Med Device companies. She writes to support her daughter, her husband and other members of the DOC. I'm pretty sure her blog will remain the same whether she is getting kudos from JDRF, Animas, or anyone else. Because she has a whole army of D mommas behind her and WE are the important ones to have a relationship with.

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  17. Anonymous, I can't BELIEVE that you would dare to post something SO offensive ANYWHERE. Hallie is blogging with honesty, and a blog is a place for her to share her feelings openly. She shouldn't have to worry about people like YOU coming around and accusing her of horrible things that aren't even true!

    Hallie, I support your decision, whatever it may be. Any company (but especially medical companies) needs to listen to their customers and give adequate customer suppport, even if they don't think they're at fault. You need to be able to trust that they will replace your cartidges if necessary and give you the confidence in her supplies that you need. Wherever you go, I hope it works out well. So excited for tomorrow to hear what it will be!

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  18. Anon, maybe you should stop taking it Hallie's decision so personally? It's her JOB to make hard decisions when it comes to her daughter's well being.

    She's a top notch JDRF advocate, and I doubt that will waiver, regardless of which pump her daughter uses.

    In the end, we really just need a cure.

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  19. Thanks for sharing your experience. I have to say that we have not had anything but great experiences working with Animas over the last 2 ½ years. We have had the pump and the remote changed out a few times and have been very happy with them as a company.

    I know you are making the decision for Sweetpea the best you can and that is all anyone can expect. I am sure it was a difficult choice to switch and I want to wish you the best of luck on your new pumping venture!


    And I agree with Wendy, a cure would be nice. :)

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  20. The situation was difficult enough, but adding insult to injury with crappy customer service and out and out lies is just too much!
    I'm sure it was a tough decision that took lots and lots of thoughts and prayers.
    Praying that this new chapter in Sweet's D-book brings peace and trust!

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  21. hallie, i am SO SORRY! :(

    trust is everything. the only pumps i've ever used are medtronic. if you have any questions about medtronic, i'd be happy to answer them for you.

    hugs!

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  22. I agree - you received some crappy customer service! I'd be very worried if the same thing had happened to us, for sure. We did receive info on the recall, both via email and a letter. I checked our lots, but I certainly did wonder how they could be sure it was JUST those lots. You know?

    In any case, I'm looking forward to reading about your new adventures in pumping!

    As far as Anon...c'mon really? Are you the same Anon that visits all the D-bloggers from time to time, instigating drama while hiding behind "anonymous?" That's great you have an opinion, but own it and don't attack Hallie for doing what is best for her daughter.

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  23. Dear Anon, I can’t believe you would be so rude as to turn this tragic situation into a personal attack. You clearly must not be a D mom who has to choose day in and day out life decisions to keep your child alive. If you were you would recognize this clearly as a helpful blog to all of us who are in difficult situations. Hallie, has been a supporter of all of us over the years. Her advice, tools, experiences have gone miles to helping me care for my child. You on the other hand has give the DOC NOTHING expect a negative opinion and been very rude. If you are a current member of the DOC and someone we all follow then you should know there are ways to get your point across and things you can say without being so mean. In regards to not "supporting" the company that the JDRF chooses to use, Guess what. The staff at said company should have been more supportive to a parent who has trusted them to care for their child. Especially if they are named as the JDRF chosen company. If you read her blog post more clear you will see that she was supposed to wait for the cartridges to come back before sending hers in. They NEVER sent her the new ones and she was being pestered to send in the old ones. I find your entire post in bad taste, bad form and just plain mean. If you choose to state your opinion please use your own blog to do so and leave the people who are supportive and friendly alone.

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  24. Hallie, I am so sorry for this persons comments on your blog. I am sorry this company has disapointed you so badly. The number one reason anyone chooses a company is the product number 2 is the services. CLEARLY they have failed on both accounts!

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  25. Hey Anonymous, I think I know who you are and might I suggest a name next time, so as to reveal yourself?! Don't hide, you feel the way you feel, get it out, but at least have the guts to fess up and state your name.

    We each have our own path to travel with the D. I fully respect Hallie's opinions, thoughts and decisions. As a fellow D-blogger, I am not worried in the slightest about the reputation of Big Pharma. Hallie has every right to speak her mind, what she thinks and feels. I think Big Pharma has bigger fish to fry if you know what I am saying.

    Hallie you keep on keepin on. I can see how your trust is diminished within the company. I look forward to reading about your resolution, for there but for the grace of God go I.

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  26. I have to say, this sounds almost exactly like what happened to us when we had an issue with another version of the Animas pump. Customer service was lacking and letter after letter saying they wanted something, but no offer to send us a replacement. I said, no. We paid for this. We are going with another company now - medtronic. When you've lost trust in a product, you have to make the decision to start all over with another company. Whether it was a faulty product - without customer service to make you feel at ease, I'm gone. It's not worth the risk. Good luck whatever decision you make!

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  27. Hallie, Thank you for sharing your experience with your readers. We all learn from one another. Good luck with your decision. I cannot wait to read about it tomorrow. Pumping and brands are a personal choice...you did what was right by your family. I respect that.

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  28. Hallie, thank you for sharing your story. You have been such a big part of my support system and I know so many others feel the same.

    These are the lives of our children and I don't think you asked too much of your pump company. A little customer service goes a long way. I'm so sorry this happened to you and Sweets!

    I'm looking forward to reading tomorrow's post.

    PS - I think that Anonymous has commented on my blog too. SUCK IT.

    MWAH!

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  29. Hallie...Thank you for sharing your experience with all of us. We do learn from each other. I'm sorry that this happened to you. I've had similar CS problems (not with a pump company...most of mine have been computer issues) and now before I even start a conversation with anyone on the phone I say..."hello...what is your name?" It amazes me how once they know that you know their name...they can't get any nicer! LOL! I just had to contact Animas today and luckily we have never had a problem with Animas. We had an "Alarm Call Service"...freaked me out at first. They told me what the code on the screen meant and all I had to do was reinsert the battery. I admit...I was thinking "thats all it was??" "are you sure??"...you do have to have trust them! If your trust was broken then you have a right to express it and like you said maybe decide to go with someone else. Laura is right Anon. can go suck it! Own up to your words or don't comment at all! I wish you all the best Hallie with your decision.

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  30. Hallie-I appreciate your honesty, I have no tie to any pump company but go with what works for our family at the time.
    As for the information about the recall I will say that is one reason I stay tied into CWD, they're very quick with reporting all the different recalls on that website. Not saying that Animas shouldn't have sent you letters, I just know that I've been tipped off to several recalls through CWD quicker than through endo office or our manufacturers of any d related product.
    Take care and don't ever change who you are to make others happy...I appreciate your honesty so much :)

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  31. Good for you for making the tough choices you need to make for your child! I am with you, I will do what ever I think is best for my girls and to heck with everyone else.

    And to Anonymous....you are clearly a coward. One who has the nerve to leave a comment such as that and not reveal who they are is simply a coward. Grow up and quit hiding.

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  32. Thanks for sharing! Your blog has been a great help.. I hope you love your new pump and get that trust back!

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  33. I don't blame for the other anonymous for being discreet. In this day and age, a person should always remember that what you write on the internet is forever and you other ladies should take note of that.

    As for Hallie, you are a drama queen. I have read your blog on and off and while I completely understand your concerns, you do go over the top. I have read a lot of blogs over the years and I have never read just a dramatic blog. The other anonymous poster made good points. Just because she doesn't agree with you and points it out doesn't make her bad.

    You shouldn't bash Animas like that without doing your research. Even if the pump really did malfunction, you have to realize that all equipment can fail no matter how well it is designed. Never rely on a pump.

    You tend to over dramatize your happenings. Yes, living with Diabeties is very stressful but it also is not the worst. My son has been T1 for 3 years and I'm very happy he can walk and play.

    Remember, when you write, this disease did not happen to you.

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  34. Ok, Anonymous #2, "this disease" DID happen to Hallie. When a child is diagnosed with diabetes it "happens" to the whole family. I want much more for my daughter than for her to be able to walk and play and I'm not afraid to say it with my name attached!

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  35. As for anonymous #1...there are a few things regarding your comment that jump out at me!

    1 - There MAY not have been anything wrong with this pump, but if you (nor Animas) examined it, then I guess we don't know for sure. All technology has the ability to error.

    2 - You may be jealous that you were not chosen to go to D.C. I am grateful to Hallie for advocating for all Type 1s.

    3 - I would hope that whichever company works on the arifical pancreas has better customer service than was experienced here.

    4 - Hallie's intentions here are nothing but good and they certainly are not for personal gain. If you knew her, you would know that everything she does is to ensure the best life possible for Sweets.

    5 - It is obvious that you are passionate about Animas and that is great for you. However, there are several choices of insulin pumps available to us and what may work for one does not necessarily work for another.

    And finally, I think Wendy's last comment hit the nail on the head...This is Hallie's decision, not yours! Quit taking it so personally!

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  36. AMEN MISTY!!! I agree that it DOES happen to the whole family. What was I suppose to do... look at my 7year old son and say "sorry buddy, this happened to you not me sooo your on your own. Good luck!"???

    The high cost of supplies doesn't effect the WHOLE family?

    When he goes low during a family outing and EVERYTHING is put on hold(even for a short time) to take care of him... that doesn't effect the whole family?

    When he is sick or his numbers have a mind of their own in the middle of the night... is HE the only one effected?

    Kids on injections that need to stick to a eating schedule... only effects them right?

    Yes, one day I will be releived of his care, but I WILL always worry, always look out for him and always be there for him. I guess that make me a part of this.

    Either way, Anon. I suggest you go back and re-read the post because you missed a couple key points...

    Research? What better "research" can you get than personal exp? This actually happened. It wasn't word of mouth.

    I love Animas and they have been great with me, as they are with many other customers. BUT they are not above mistakes and unfortunately they dropped the ball here and paid the ultimate price for it. Loosing a customer.

    I hope they looked at this post. I hope that they fix whatever went wrong so that it doesn't happen again... so that maybe, one day, it won't happen to you.

    Call me a drama queen too if you like.

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  37. Dear Anonymous#2, you are also a COWARD. Buck up and say what you want to say with your name attached to it. Don't go and attack others if you won't stand behind it. Yes, everyone is entitled you their opinions, even you, but your opinions mean NOTHING if they don't have your name attached to them!

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  38. Thank you for sharing this post and every post on your blog!!

    Spiteful...NO WAY!!

    Drama Queen...Really?


    I think sharing your story and feelings of the very dramatic events that took place is very brave and very supportive for our whole community to read.

    I thank everyone who is showing their support to Hallie after the nasty and judgmental anonymous comments. There is no need for that B.S.!!

    As a mother we do everything in our power to keep our children safe. Our children TRUST in us that we are making the very best decisions on their behalf. That is what being a parent is!!

    I would NEVER, EVER attach a devise to a child that I did not have 100% trust in!!

    BUT THAT IS JUST ME!! oh and Hallie.

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