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Pricey Stuff.

Back when I was a young bird with type 1 diabetes, insulin cost about $70 dollars per bottle.  (And I had to walk uphill both ways to the endocrinologist's office.)  I had no concept of this cost, or how it played into my family's finances, at the time.  I would just open the fridge door, grab the bottle, uncap the orange top to a 1cc syringe, and take the units my mom would yell to me from the kitchen sink.

"Two. Two of Regular should do it.  Rotate to your right arm this time, okay?"

"Okay!"  (And then I'd proceed to jab it into my left arm because I'm right-handed and also stubborn.)

Now, twenty-five years later, insulin has taken a bit of a price hike.  I just ordered a three month supply of Humalog from Medco and the total for the insulin came to six hundred and ninety-seven dollars.  For six bottles of Humalog that will be all gobbled up by early March.  (And thanks to a high, but manageable-on-paper deductible, we're responsible for the full cost this round.)  Almost seven hundred dollars worth of insulin.

We're lucky that we're able to pay for that cost without panicking, but knowing what these bottles cost without the assistance of insurance makes me look at everything through a diabetes lens.  When three days are up on my insulin pump site, I am very aware of the twenty-odd units left in my pump cartridge and in the tubing.  And when I refill the pump, I make sure I only put what i think I'll need into the reservoir, instead of automatically filling it to the 185u mark.  (Which is what I did before, but now I'm very aware.)  And when I prime the 43 inch tubing, I have this mental image of siphoning it out like I'm draining gas from a Jeep Wrangler when I'm done with the site.  (Ew.)

The other day, my insulin order arrived.  The UPS delivery guy rang the doorbell, and I greeted him with a messy ponytail.

"I have a delivery for you, but I didn't want to leave it outside in the cold.  It's medication," he said, handing me that familiar "giant pillow" that protects the insulin vials during shipping.

"Thank you!  I appreciate you taking good care of ... of the drugs," I said, realizing I wasn't going anywhere productive with my statement.

"Yes, the drugs."  He smiled as I signed the electronic receipt.  "I'm curious what comes delivered in a giant puffy pillow."

"Insulin.  There are some bottles of insulin in there."  I handed him back the signature pad.  "Thanks for bringing ... the drugs.  That makes you sort of my dealer."

He tucked the signature pad back into his pocket and, without missing a beat:  "No problem.  Call us when you're ready for your next fix.  Happy holidays, miss."

Not cheap, this stuff.

Diabetes is an expensive disease.  And the things we use to keep ourselves alive are pricey little items, from the vials of insulin to the little plastic test strips we shove into our meters.  In the last few years, I've had the benefit of forgetting how expensive managing this condition can be, in part thanks to sponsorship agreements and excellent health insurance, but I have had my share of hits to the wallet, and many, many reminders of how lucky many of us are.  (Watch the "Life for a Child" documentary when you're feeling a little financially strapped and your perspective will shift in a moment's notice.)

I went back into the house and unpacked the insulin that was just delivered by my UPS drug lord.  And as the bottles lined up neatly in the butter compartment of the fridge, I was thankful.  I'm thankful that I can afford this necessary medication, but I remain hyper-aware of the costs of both having and not having access to it.  A fridge full of insulin makes me a very, very lucky girl.

(With the holiday season upon us, now is a good time to think about others and help, if you can.  To make a donation to the Life for a Child efforts, please click here.)

Comments

Kerri, you are so right about diabetes being an expensive disease. I do not know what we would do without our Flexible Spending Account, because, honestly, sometimes we have to cut back on other things in order to pay for the insulin and test strips. When that reimbursement check comes in, it's like "Woohoo! I can get the oil changed on the car! Or I can buy conditioner for my hair!" I really don't know what some people do, especially if they only have catastrophic health insurance.

I also freak at the cost of insulin when I see the enclosed EOB from Caremark in the big puffy envelope.

I do have good insurance, but I live with the fear of not having it, due to life changes.

When I started my pump, I no longer had the need for the my 90 day supply of Lantus that was in my fridge. So, I gave it to a friend in need. It was a tearful moment for both of us... I was able to help someone in need to survive for a few months and she did not need to decide between buying insulin or groceries for her family.

....her is my price shocker...$1.75 for NPH in 1972. But that was a lot of money for my parents when earnings were less than $100 per week.

Every year, during open enrollment time, one of my office mates complains over and over about how our company's premiums keep going up. Well, my family is one of the reasons why. I am not thrilled with my job, but I need the health insurance.

I have kind of come to the conclusion that for the first years of Lauren's Post-college life I am probably going to still have to pay her co pays etc.... I mean how could a young person starting out EVER afford all this? And i NEVER want her stressing over using a strip or insulin. I worry about it a lot.

When my husband and I elected for benefits before I was diagnosed, we unintentionally got a plan with 100% durable medical good coverage. It was humbling to get my insulin pump statement and not have to pay the $4,500 on the invoice.

Diabetes is incredibly expensive and it's things like that which make me thankful for good health insurance, even if it wasn't intentional.

Every time a 3 month supply comes in for my daughter, I feel like it's Crhistmas morning! I'm never so happy and greatful as when I get that big box of strips and alcohol pads and syringes when we mdi'd or infusion sets. And when I look in my fridge and see a whole row of insulin, I feel safe and happy knowing my daughter will live another 3 months--I know that sounds melodramatic but having a stockpile of insulin makes me feel like I'm ready for a war or a giant asteroid. If the worse should happen, it gives me enough time to learn how to make insulin ala Eva Saxl's husband at the port of last resort. It's mental, but this is actually stuff I think about. In a black out, "SAVE THE INSULIN!"

amen. and i use the super-long tubing too. i've thought about switching to shorter because of all the insulin that's left in the tubing when i throw it out. but i really love my long tubing...

Hi Kerri,
Have you looked into getting your insulin from Canada? I just bought five vials of Humalog from NorthwestPharmacy for about $175. And free shipping. :)
If I couldn't do this, I'd be your friend who has to decide between meds and groceries. I'm praying legislation won't prevent this opportunity for us.

I don't think people using insurance is why premiums are going up. If that were true, insurance companies wouldn't be making record profits.

I found out yesterday that I have to spend my FSA by the end of the year. Is it weird that I calculated the amount in vials of insulin and packs of blood ketone test strips?

I hate the cost of everything! It makes me feel the need to hoard pump supplies. I live in fear with 2 type 1's in the house that we will loose insurance, more so me than my daughter (her father pays her's). I live every day now with no job knowing that If I dont find a job with good insurance I will be in big trouble! I dont know what we would do without it. We have to have this stuff to live!

when I change my infusion site and reservoir, I dump the small amount of insulin in my old reservoir back into the vial. That's probably bad practice, but I hate wasting it!

I am switching to my husband's a high deductible plan starting next week, and am not looking forward to the first payment, but thankfully my husband has an HSA that he hasn't used much that will be able to cover most everything.

I am grateful that Matt and I can afford the top-tier health insurance plan from his employer, but reading this post reminds me that I shouldn't take that for granted.

Also, I *wish* I only needed 6 vials of insulin until March. Stupid resistance.

It never fails to surprise me how different healthcare costs are in different countries. In Australia, it costs around $35 to fill a prescription for insulin (5 x 10ml vials). If you are on benefits it costs around $5. All we need is a valid script from our doctor (GP or endo) and we fill it ourselves at the pharmacy. This is all part of our Pharmacy Benefits Scheme (PBS).
Strips cost around $15 for a box of 100 (less than $3 if on benefits) and a box of pump infusion sets is $15. (Diabetes supplies are subsidised as part of the govt funded National Diabetes Services Scheme - NDSS.)
Where it gets tricky is when it comes to pumps. To have the cost of a pump subsidised, you need private health insurance which is user-pays. Basic hospital cover starts from as low as $1,000 per year and for this you will get the cost of the pump reimbursed 100% (Medtroic Veo pumps go for around $8,000 here). So, this means if you can't afford insurance you need to fund the pump yourself. (Although we do have a subsidy scheme for jnder 18s whihc ismeans tested and covers up to 80% of the pump cost.)
Higher levels of insurance will cover other costs such as physio, obstetrics, optical, dental etc.
We get no subsidy for CGM here - device or sensors, so I fund that myself.
I wonder if there is a perfect system anywhere?

I have actually been thinking a lot about this very issue lately. While there are so many people pushing for improved technologies that will hopefully make living with T1 diabetes much easier, there are still far too many people who cannot afford the basics that all type 1s need just to survive (basics being insulin, syringes, test strips, and a meter). I'm on TuDiabetes and there are far too many posts from people in the U.S. who are struggling to get these basics, either because they are between jobs or have a job that offers no insurance coverage. I've talked to people online who are rationing their insulin because they are without insurance. This is unacceptable.

Medicare provides automatic coverage for people, regardless of age, who have end-stage renal disease (ESRD), a condition that is sometimes caused by diabetes. Why is it that we provide FULL COVERAGE for a condition that can be the result of poorly-controlled diabetes, but we won't provide automatic coverage for the tools that, in some people, can prevent ESRD? This makes absolutely no sense.

I really want to see automatic Medicare coverage for people with T1 Diabetes. T1 is a unique disease in that we are all immediately dependent on insulin. Without it, we die and many of us could die very quickly. We should never have to wonder where our insulin is coming from or worry that because we're without insurance we won't be alive a week from now.

Kerri, I know the supplies were scarier looking back in the day, but you probably used a 1 cc syringe. It would take ten of those little orange-capped vials to fill a 100 cc syringe, which would have scared the bejeezus out of me!

But you're right. Costs are out-of-control. Fortunately, I've got a great insurance plan (my wife works for a pharma company...even though they don't make D-stuff...and they generally help their own industry) and I've got a nice stash of pump supplies because I know the day will come when that coverage ends. And I still do all I can to not waste too much insulin.

Scott - LOL! You are totally correct and I am a moron. It was a 1 cc syringe. I changed it to protect the innocent (me). ;)

The price that pharma companies are charging people for insulin is disgusting.

After recently coming back from working with a truly humbling group at the International Diabetes Federation World Diabetes Congress in Dubai, I was shocked to learn that there were many young people, my age, in the SAME ROOM as me who could not afford to take insulin each day. This fact brought up many questions, brainstorms of possible solutions and much anger.

Previously, my mindset had been to fight at the governmental level to help gain subsidies for insulin my my country/province. I now realize that this is only a band-aid fix.

The outrageous/embarrassing/disgusting cost pharmaceutical companies are charging for this life saving drug is the problem.

(Did you know that the true cost of getting insulin to the 70,000 people who will die early each year because they cannot access insulin is only $10 million??)

Thanks for the post, Kerri.

You can still get Regular for seventy dollars per vial, and no study yet has really shown a benefit for Humalog v Regular.
Here's a letter printed in the Canadian Medical Association Journal with a table of large studies comparing Humalog and Regular: http://www.cmaj.ca/content/159/11/1353.reprint

I switched from Novolog to Regular a few months ago and have been very satisfied with the Regular. With my insurance, the savings to me comes to only about six dollars per month, but I actually like the Regular better anyways.

I went back to school several years ago to become a teacher and right after that, they stopped hiring teachers. My husband works for a small, family-owned business. I recently found a long-term substitute position with a school district that pays $10.71 per hour. Doesn't sound like much, considering I have 1.5 graduate degrees, but the fact that I get health insurance makes the it worth another $18,000 a year - the amount my husband's employer was paying for our family of five for coverage from a crappy plan with a $3,000 deductible. I am praying that I can either find a permanent position or at least find another year-long LTS position so I can afford to stay alive.

financially and emotionally Diabetes is a terrible thing!

Pleeeeease don't put the insulin back in the vial after you've worn it on your body. It's a bit like pouring old milk into new milk.

Well bugger my giddy aunt. I do love the NHS, even if it is a bit rubbish at times. I'd hate to have to shell out for all that. I'm a student so I can barely afford to eat let alone pay that much! Having looked in the BNF for prices of insulins (one 10ml vial of Humalog that I use comes in at £16.61 or $25.69 in American) This is one thing I really hate about the health care system in America. There is no attempt to disguise the fact that it is a business run purely for profit. Health is traded as any other commodity. Here in the UK things are different thankfully. I don't have to pay for anything, for this I am eternally grateful. God help me if I ever do the across the pond exchange my university offers next year.

It is awful... and Hannah was right about stupid resistance. I figure I rip thru 12 - 14 bottles (10ml) of Lantus ($75. per) AND 12 - 14 bottles of Novo Rapid ($36. per) every 3 months. I've stopped counting! I'm lucky to have a Pharmacy who will let me charge my meds until my reimbursement check comes in.

For any Canadians out there who use Shopper's Drug Mart -- get your insulin, test strips, etc... on 20x the Optimum points day. Or use Safeway for the Air Miles. or any other 'reward programs' who will reward you for D-supplies! Believe me... it helps!

I lived without health insurance for about 5 years in my early 20's . I could barely afford my insulin and test strips were a luxury I simply couldn't afford. I reused needles until the numbers rubbed off or till they wouldn't pierce my skin any longer. Im blessed to have great insurance now, I test with reckless abandon! Years of living without has turned me into a hoarder, I stoke pile supplies whenever I can.

I pull the insulin from the tubing into the reservoir and inject it back into a humalog vial. I'm careful when I use insulin from that vial, but so far I've never had any of it go bad (despite all warnings of temperature requirements, etc!)

Going from amazing insurance to no insurance has been.....scary. I still haven't run out of my hoarded supplies, but I know that day is coming. It means switching back to MDI because I can't afford pump supplies. It's hard to choose between my bank account and quality of life, but it seems my bank account is winning.

I've actually written quite a bit about this quandary, especially in preparation for the international move and when my husband and I purchased life insurance (before we knew about the international move). It hurts my brain and my heart to think about it too much.

That is so true. I have two siblings plus myself with type 1. My brother recently closed a small business he was running due to the economy, he had minimal coverage but now was moving from NV to another state so was unable to apply for NV insurance, leaving him uncovered. It breaks my heart that a lot of the money they are trying so hard to save and be thrifty with ends up going to one bottle of insulin @ $120/each!

I have been so blessed to have a wonderful job with amazing insurance so I've been able to share my "blessings" with him by ordering a few bottles extra or any extra pump supplies (when I was on the minimed) were sent his way. I was very thankful I could help him in this small way. I also would ask my doctor for any extras they had from reps or whatever and would ship it off to him.

It's insane that the cost continues to rise for insulin, which has been on the drug/Rx scene for decades, while other drugs come out with generic and get cheaper and cheaper. Why is this? It feels to me like a shady way drug companies are trying to line their own pockets because they know we HAVE to have this medication, or we will surely die.

I was so touched by a story I heard on NPR when they had all the tornadoes back east last summer. A mother of a diabetic ran into her home to grab the life-saving insulin, she took what her son would need and donated the rest to diabetics who may not have gotten away with their medication. (Yes I cried.)

Thanks for posting on this Kerri, it's something that is often on my mind.

Humalog, Novolog and Lantus, at some point, won't the patent protection run out so generics can be manufactured? I think there is some kind of special arrangement with the Pharma companies to extend the time the patent expires. But we need the generics. Too pricey. What about those who can't pay for it no matter what sacrifices they make?

Life saving medications should not be that expensive. I was recently diagnosed with CVID and am getting IVIG once a month. For one month my insurance is billed $5,000+, they pay for about $4,200 of it and $760.00 of that is my portion. I wouldn't be able to afford it if I didn't have insurance. I can't afford the 700+ a month my copay is (lucky for me I only have to pay for 3 months worth of copays before I hit my out of pocket max). I take over 500.00 a month worth of medications on top of that. I realize it takes a lot of money to develop medications and produce them, but come on.

I am thankful every time we go to the pharmacy for test strips, glucose tabs, insulin and syringes that we have insurance to help. Before we were married my husband did it all on his own and I just recently asked him how he did it and he said "I used the cheapest of everything, rarely checked my blood sugar and took as little insulin as I could." It nearly broke my heart. This is an expensive disease, and like you, I'm thankful that we're able to afford each new order we place.

Just adding, for Julia - my understanding (and don't quote me on this!) is that there are no patents on insulin - it's a biological, not a drug, technically, so it can't be patented and will never go generic. There's good and bad to that...

Like some of you, when I go to CVS to pick up the big brown bags of diabetes supplies for my son, I feel like I'm getting a gift. I look in the bags so eagerly, as if a fun surprise will be inside. As a parent, I wonder how my son will ever get health insurance as an adult. He has, what---until age 26 now?---18 years more with our plan and then...how does this work? I liked reading this but I hate this issue so much. Having diabetes is bad enough; it's INSANE to me that we have to pay for the privilege!

I had always been on an insurance with company's at the pharmacy. This year with a new job I went on insurance that makes me pay 100% at the pharmacy and reimburses me 80%. I was floored at the up front cost of the insulin and test stips for the month. Not to mention the forever wait to get the reimbursement from insurance (still waiting on October's insulin money, but have November's - weird and annoying).
I can't imagine the actual cost for a bottle of Novolog to be produced is that high, they just know that we'll die without it, and can charge what they want. As a young adult I can say paying for my own prescriptions is not easy, and I got a good job as a teacher. At least young adult now can stay on their parent's insurance. I would have loved to be able to have that freedom a few years ago.

Thanks to everyone who have responded to Kerri's blog today. Just reading them all has been rewarding especially since I have no insurance (right now ) and pay for my insulin (Lantus and Novolog pens) each month at a cost of around $ 425.00 ) The only reward is that I would be paying that amount in insurance cost ( if not more) each month anyway. Yes, I support abd need lower cost for insulin of all kinds !....solution..make more plants to manufacture it.....competition.......government can you provide incentive's please?

It's ridiculous. It astounds me every time I look at the "before insurance" cost of the supplies. My 30 day supply of test strips the other day was $315...over a dollar per strip. There's no way it costs LifeScan even a quarter of that to make those tiny things. If it does, I may be willing to change my views on child labor if it brings the cost down. Give 'em a glue stick and some electrodes and see what happens.

I am of course kidding, you just caught me on a bad day, as my insurance company has already struck a nerve with me today.

Hello Kerri, it’s quite a coincident that your post today is about the cost of managing diabetes. Last night I found out that my health insurance will be canceled on 1/1/12. I am so sacred. I am not working and I have 6 months until I finish school. I am way over the age of being placed on my parents insurance. I have no idea how I am going to afford pump supplies, strips, insulin and CGM sensors (my life support). These items should be more affordable for those of us who are not able. By no means will I be able to pay for any of the items I need.

I could write a story about this! Hits so close to home. My husband is a pumper and uses U-500 insulin (pretty rare) and expensive. This time of the year, we add up the medical bills for tax time. It never fails to shock us how much this disease costs. Over the course of nine years, the costs have skyrocketed to over $7,000 this year out of pocket. My husband isn't able to work and is in the process of applying for disability. Meanwhile, I work for an insurance company and chose the most expensive plan but the deductible, doctor visits, DME equipment, labs, and other ancillary costs add up big time. I told Scott last week we could have gone on two nice vacations for the amount we have spent this year. Hopefully, some of it can be written off on our taxes.

I am a Type I. I take purified R and NPH Hypurin PORK insulins. I am allergic to Humulins or synthetics types, or all insulins lines made by the pharmacitauticals companies in the USA. Thus, I Have to Import my Hypurin Pork Insulin from the UK, via Canada. I have a ''Mediacal Letter of Necessity'' form multiple Doctors that I need Pork Insulin to live. However, I still have to pay out-of-pocket as my insurance will not cover any drug the FDA says I get from out side of the USA not on the apprived list of RX's. I was told by my local congressman that this was not the "Intent" of the Law made/passed by congress, but this is the reality or injustic of my situation. I had multiple lawyers work on this issue case for me pro-bono, as they felt it was wrong as well. But, I always end up losing outin cort. The FDA, Insurance Companies, and the RX companies always win out as I pay out of pocket for my Hypurin Pork R and NPH insulins. Any help or ideas would be greatly appreciated. I cannot keep spending over 250+ dollars per month on my 2 bottles of insulin. I have been doing this since the end of 2006 when the FDA and the pharmacitical compainies simoultaniously discontinued the last production LINE of Pork Insulin by Lilly, and then the FDA took it off the "Approved List" market on RX's in the USA- making it impossible for the Insurance compaines to cover this montly cost of mine- buying Pork Inuslin. I need help my diabetic community. Any help or thoughts would be appreciated. This is the law as currently written - it's impossible :( PS- The FDA ''will allow'' pork insulin to be imported into the USA for my Medical Necessity to live, but the FDA will Not Approve the Pork Insulin Drug to be covered!!! ... thus, still making it impossible for my Insurance to cover this Pork insulin that is needed.... Please Help

Insurance is a mentally tiring topic. I'm very very lucky to be on my parents' plan with only a small co-pay for my Lantus and Novorapid pens (I consider a fridge full of pens well stocked. Food? What food?!). However, my strips are not covered (~ $35 per box), and forget things like cgm and pumps. There's currently zero coverage for pumps and they get *expensive*

I hope Dubai's interest in hosting the IDF WDC will be reflected in better insurance options for all its residents, starting with the basIcs.

This issue pisses me off like no other. Thanks for bringing it up, Kerri.
To me, the Congress/Insurance/Pharma corporate tango is a Gigantic Pulsing Parasitic Octopoid attached to our faces and bank accounts.
There. I said it.

I managed without insurance for my whole diabetic life (43 yrs), preferring not to participate in Evil (Profiting from sick people? What else can you call it?). BTW, anyone needing to know the utter cheapest ways to get what you need, email me.
Husband and I were holding up ok $-wise until one day my head came loose - Neck vertebrae C4 and 5 just let go of each other (?) and the damage to my spinal cord took away sensation in my arms, destroyed most of my balance and made my feet and legs cramp all the time. $40,000 later I had a plate in my neck to hold it together. Some of the damage healed, some is permanent. That bill reduced us to complete poverty, qualifying me for Medicaid. So for the first time I can go to the doctor whenever I need to. For nothing. It is such a strange kindness! I so wish everyone could have it. I believe everyone should have it.
Thanks for giving me a place to go on about it.

lol love the interaction with the UPS guy. My UPS guy just rings the doorbell, drops the package and leaves. I don't think I have ever actually seen his face...LOL. Only his back as he walks back to the truck.. since I am usually sitting on the couch or upstairs with a cat on my lap..

I re-read this today, and your first sentence jumped out at me - "Back when I was a young bird with type 1 diabetes" I want my son to write this one day, and finish it with something like "we had to use insulin, instead of getting new islet cells."
Its been a rough weekend...

Great post, Kerri. It is so expensive, and adds up - and really makes you wonder how it really cost back in the 80s and 90s when we weren't paying attention and it all "magically" appeared. Your post made me curious and want to examine what we'd just paid. Went back to retail pharmacy and found, despite our $40 copay for three Humalog bottles for a month, it would have cost $420 for those three bottles without insurance... meaning it'd be $1,260 for three months of insulin with no insurance!!! Now, I'm just depressed. Think it's time for some coffee. At least that's cheap - well, cheapER.

Mike probably knows the answer to this, but why isn't there any discussion any more about discriminatory pricing? When I worked in a pharmacy years ago, that was a big subject. I have been out of the D discussions loop for a long time. Maybe US legislation had the last word?

Do you ever leave air bubbles at the end of the reservoir? I've been thinking of doing that. I wonder what everyone else does to not be so wasteful.

OMG it seriously took your first sentence for it to click in my brain where your 'bird' nicknames come from.

signed,
impossibly slow

you're so right that managing diabetes safely is incredibly expensive. i've been lucky to be able to afford the stuff i need to keep me healthy--but at the same time, every time i fill up my pump or check my blood sugar, i'm reminded exactly why we in the u.s. need to fix how we pay for health care, and why it costs so much in the first place.

In Norway we have to a set amount about 300$ in total before we get the rest of the supplies for free (regardless of wealth), this system applies for all sorts of medications that is needed for long time use... In order to obtain the more pricy stuff like a gcm and pump the endo has to fill in a form stating why the patient need it, then sends it to the local health supply center and the equipment arrives after 3-4 weeks, after that first approvement I only have to make a call to the center when I'm out of supplies and they send new....
I guess we're quite lucky here up north :) not having to worry about the cost of the supplies....
I do know they have simmilar systems in the rest of Scandinavia :)

i was diagnosed with type 2 last yr. I was 23 years old and it scared me to death. mr dr prescribed me lantus and humulog...i was afraid of needles. i didnt have insurance and the lantus and humulog was around $400/month. I did some research and found a company that could help me with my insulin and supplies. they saved me like $300 a month. ive been with them for over a year and they are great. here is the link hopefully they can help more people www.myrxhelpers.com

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