Insulin Prices: When You Can’t Afford to Stay Alive


A few days ago in Facebook, I posted a link to an article about the rising costs of EpiPens. A T1 friend of mine commented that link that she is pretty much “done” because of the price of insulin. Yesterday, several people posted an article about the rising costs of insulin. My friend shared that link and stated that she can’t afford to stay alive. I told her to promise me that she would go to the hospital when she runs out of insulin.

She sent me a PM that I am sharing here:

Kelly, my life is basically over. I’m coming up on my first bday with out my mom. I have no family. No friends here. I work a job helping others and get shit on for it. I’m not saying I am suicidal, I’m saying I am exhausted, tired, burnt out. I get no help. I never thought that I would be in this position with my insulin. I was the earliest person who went on a insulin pump. I was also the earliest to be put on Humalog when it came out. Nobody in the doc cares. You have a blog, so you have a voice. I’ve talked with people on line about shaking the doc and insulin companies awake and nobody wants to do so, they told me that they are more at ease with begin complacent and apathetic. How sad.

My friend has a job with insurance. However, she has a very high deductible and has to pay 100% of the cost until she meets the deductible. She is out of money and her doctor doesn’t have any samples to give her. I know samples seem to be drying up – my doctor isn’t getting them anymore either. Because she is working, she makes too much money to qualify for any of the prescription assistance programs. She was an only child and both of her parents have died. She has no family to help her.

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Hospital Nightmare and Escape!

I ended up in the hospital with an infected foot. Last Friday, I went to get some NPH insulin because I still didn’t have good Levemir. Novo Nordisk replaced the 2nd bad box with the same lot number and that was also bad. They wouldn’t ship it Friday because my area doesn’t have Saturday FedEx deliveries – it was going to be Tuesday until I could get it.

I don’t know if it was the NPH or something else, but I gained 3 pounds between Saturday and Sunday and another 5 pounds between Sunday and Monday – and no, I wasn’t snacking on Christmas cookies! I was really swollen and when I took the bandage off my foot Monday morning, my foot was getting red. I “thought” it was because my bandage being tight when my foot swelled up. I didn’t think it was infected because my blood sugar was doing really good (other than the bad Levemir and testing out NPH). I didn’t feel good but I thought that was from being exhausted – that was day 8 of taking insulin every 2 hours and I was really to drop over.

Tuesday morning when I went to get my shower, I took the dressing off and the red had spread so I knew it was infected. I called my mother to come and take me to the ER. We went to the local ER at Conemaugh Hospital. The doctor agreed it was most likely infected so he did some blood work. My SED rate and white blood cell count were both up and he wanted to admit me. I didn’t want to be admitted there because I go to the wound center at Ohio Valley General Hospital in Pittsburgh and since it was a wound related problem, wanted to go there. They were great in calling Pittsburgh to get me transferred there.

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Oh Crap 399 – Oops!

Tuesday night I went up to bed about 10.  I have a dual-alarm clock that I set for 11 PM & 7 AM – two of the times that I take Levemir.  I woke up a little after 7 this morning without my alarm going off.  It didn’t go off at 11 either.  Someone forgot to set it!

I knew it was not going to be pretty, but I was NOT expecting this:

Blood sugar 399


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Doctor, A1c and Moving Bugs

DoctorI had my doctor’s appointment Friday morning. When he picked up the lab work, I told him that my A1c would be up because of the bad insulin problems that I had back in January. The A1c was on the second page and when he got to that, he said, “your A1c.” Then he stopped and turned towards me with the best very mean look on his face that he could do. I was sitting there not sure if he was messing around or it was really bad. I was expecting really bad. Then he said that it was 5.7! Whew!

I was really worried because I knew I had a lot of highs in there. My average from my readings for the period covered by the A1c was actually 126.2 but my standard deviation was 62.3. That’s a lot of bouncing around. Good for me is about 28-30. Not even close!  Like most people, I wait to test again when I know I am high. I test a lot when I know I am low.  Testing more when low and not when high helps make the average look lower than it really is.

I also told him that the Levemir people had asked me if I had talked to him when I had the insulin problem. He said, “Did you tell them that I said that I am not the manufacturer.” Of course I did not tell them that because I did not call him about the problem. I told him what I told them and that was if I had talked to him, he would probably tell me to replace the insulin. If I ever have an insulin problem in the future, I have an answer from him if they ask me if I talked to my doctor.

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Unofficial Basal Testing, Sort Of

I have been having some whacky blood sugars this week – going a little low after breakfast and then up over 200 around lunch time. I wasn’t sure if the lows after breakfast were from needing to adjust my breakfast Apidra or the highs were rebounds or needing more Levemir. The sure-fire way to figure things out is to do some basal testing, but … Normally I don’t mind doing some basal testing when I need to but … it is cold out and I have been freezing. When I don’t eat, I get even colder.  I know, excuses, excuses.  There was no way I was going to give up coffee and tea to do basal testing. I would surely freeze to death!

I have been working on a little project this week and Wednesday and Thursday nights, stayed up very late – which is not normal for me. Actually Wednesday night, I didn’t go to bed until about 5:30 AM Thursday morning. When I got upstairs and looked at the clock, I cringed when I realized that my alarm would be going off in about 1 ½ hours to take my Levemir.

Then I got the bright idea that I would take my Levemir early so I wouldn’t have to hear the alarm at 7. I have been having some problems with DP and my Levemir starts wearing off before the 8 hours is off. I tested my blood sugar before going upstairs and I was around 120 so taking the Levemir early should not be a problem.

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Pens or Vials?

Pens and vialsA month or so ago, a friend of mine was talking about her insurance changing what their preferred insulin was. She mentioned using vials. I already knew that she used vials but something in the way she said it made me ask why? She is someone that uses small doses of insulin on a daily basis.

I know that some people prefer to use syringes because of being able to get smaller doses than you can with a pen. However, using a syringe is no excuse for continuing to use a vial because you can stick the syringe into the pen and dose just like you would with that vial. Some people also use the regular pen needles but pull out the remaining insulin with a syringe when the pens says it is empty but you can see insulin in there.

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