Tuesday, September 20, 2016

Magic always comes with a price.

I used to be an avid watcher of the ABC show “Once Upon A Time.” Within the show, the character Rumpelstiltskin could perform wonderful acts of magic, but never without first warning the person whose wish is being granted, “Don’t forget, magic always comes with a price.”

As I look back at my meetings with Novo Nordisk and Medtronic last spring, I can’t help but feel conflicted. They are good people, trying to do good things. I promise you they aren’t virtual Ebenezer Scrooges. They are people who genuinely want to make a difference in the world.

But…(you knew that was coming,)

Their magic always comes with a price.

The fact is, you can’t serve three masters. These companies feel like they can serve the patient community, their shareholders, and the insurance industry, without conflict…but the truth is, it’s impossible.

The greater master will always be the bottom line, and because of this, when it comes down to the wire the patient will always be the one to get the short end of the stick.

We have a couple insulin companies monopolizing the market on the medication that keeps my boys alive. Choices within the confines of this disease are severely limited, yet they are being taken away from us more and more day by day.

Insurance companies tell me what insulin my children must use if I want them to pay for any of it. They negotiate prices and who loses? My children. Everyone is touting the words, “Better outcomes,” yet they aren’t giving my doctor and myself freedom to choose what would produce those “better outcomes” for my children.

People are choosing medications not because they are the best for their health, but because it’s the cheapest, and because it's the medication their insurance company is telling them to use.

It makes me throw up in my mouth thinking about it.

I don’t care how many times anyone in the free world says it, Humalog and Novolog are not the same. Novolog produces better outomes for my children, but my insurance company’s preferred insulin is Humalog…so we pay A LOT more money because my doctor and I both know what is best for my boys, and we are acting on that knowledge.

And now it doesn’t stop with insulin. Now one very large insurance company is only covering one kind of insulin pump.

And this kind of pump only links to one kind of meter.

And this one kind of meter uses only one kind of test strips.

Choice? We have no choice.

When it comes to Type One Diabetes we are already strapped with very limited choices.

Three kinds of fast acting insulin.

Four different pump companies.

Just a few major blood sugar monitor companies.

And still, no one at our pharmacy even knows what a Blood Ketone Meter is. (Which might be for the best, because many insurance companies don't cover Blood Ketone Strips as they retail for $10 a strip.)

We’re shoved into a corner, paying three times the dollars we did before, and the people doing the shoving are shrugging their shoulders and saying, “Not our fault.”

So what can we do? We can’t fight back and say, “I’m not buying insulin anymore!” (Because, death.) Sure, we can stop using insulin pumps and move to MDI, but I know in my childrens’ situation that would totally suck.

And pharma knows that too.

They know they can do whatever the hell they want, and play these games within the United States Healthcare system because WE CAN’T DO ANYTHING ABOUT IT.

Die or infuse insulin.

God help us.

All the good these big companies are doing in the world is awesome. Seriously, they do a lot of good. But my boys are the ones paying the price for that good….to the tune of $400 a vial of insulin, $7000-$10,000 for an insulin pump, and $1 plus for every blood sugar test strip that they use.

The Healthcare System in the United States is broken.

It’s not going to be fixed without a fight. Insurance companies won’t fight it. Pharma won’t fight it. Only we can fight it.

It’s time our community packed a bigger punch.

Tomorrow: more information to come. We will be introduced to real life stories, and make some real life decisions regarding what we are going to do about it.

We, meaning you. Meaning, all of us.

Let's face it, if you have a butter compartment full of insulin right now, you are blessed. There are some who do not. There are some who make choices between food on the table or insulin, rent or insulin, paying the electric bill or insulin. I promise you, if it were you considering rationing insulin, or if it were your child's life that you couldn't afford  to save every day...you would stand up.

It's time.


  1. Yes-- it is time. Thanks for your thoughtful words. I share your feelings (and your insulin woes) 100 percent.

  2. Powerful post. I agree...it's time.

  3. Yes girl, YES!!! My son was diagnosed at age 5 in Sydney, Australia. I am lucky enough to be married to an Australian and my children are even luckier to have American citizenship as well as Australian.. (Yeah, yeah.. the U.S. doesn't recognize dual but most all the other countries do because ... well.. America.) Anyhow.. that said... we experienced all of out T1D firsts in the great land of Oz.. and wow... its so different and in a good way.. not in a "ohhh big scary socialized medicine way" that certain news channels, pundits, political parties and big pharma try to feed the American public. I'd be happy to send you photos of our order forms for all of our diabetes supplies.. so you can pick your jaw up off the floor when you see the drastic cost difference. My son is an Aussie citizen so he was covered under the Australian medicare system. We were in the children's hospital for 3 weeks due to other complications at diagnosis (blood clots) and we didnt receive one bill. Does it cost more money to live in Australia.. yes.. but at least the high taxes you pay go to something bigger and better for the citizens. In fact.. we were given paperwork to fill out on how to get a carers payment. Yes, the Australian government recognizes that a T1D child needs full time care and supervision and wants to accommodate families who lose wages while taking care of their child. We moved back to the states in 2012 and WHOA NELLY.. what a shock we had.. we went from getting needles for free to paying for them.. - yes.. all needles and syringes are free in Oz.. even for drug abusers - think about it.. it makes sense.. cuts back on intravenous drug diseases that are contracted from sharing needles. There are also used needle bins everywhere in public bathrooms to keep used needles off playgrounds and in their proper receptacles. I digress... BUT... the needles werent the sticker shock. Insulin and strips.. HOLY MOTHER OF all things expletive.. We were paying $15 for a 5 pack of insulin pen vials in Australia!! We were paying $15 for a pack of ketone blood testing strips.. which were standard - btw- and given to us in the hospital at diagnosis. We paid $10 for a pack of 100 test strips and we had options and choices of which meter we wanted to use and which strips we preferred. My son was registered to the NDSS and received a discount. If you are out of work or on "well fare" (as the US calls it) most everything would be free. Now.. I'm not a person who is looking for everything to be free but I am looking for everything to be fair. Just what is this mark-up the U.S. big pharma puts on our life saving insulin? How does one pay $15 in Australia vs $350 for 3 vials here in the United States? You cant tell me that the Aussie government is eating the difference.. because A) I wasn't born yesterday and B) I wasn't born yesterday :-) Its quite a sad situation when humans benefit from the sickness and disease of other humans. Its probably the highest form of douchebaggery (excuse my language) that I could possibly think of to be honest. I feel sad for (all of) our situation with the cost of keeping our children alive but I do find solace in the fact that at least my family has the option to get the same level of healthcare in another civilized (and socialized) country.. I just wish that all other T1D families did too. Here is a link to the NDSS supply order forms for you to look at.. https://www.ndss.com.au/product-and-supply Now compare this to what we pay.. mind. blown.

  4. I don't think you could have hit the nail on the head any harder. Sadly. Our children suffer and the rest of the family suffers because of the financial blow

  5. Yaaas!!!! Our doctors should be able to decide what insulin works better based on results, not what company made the best deal. And what happens when that one preferred pump company takes over??? When there's no other companies to compete with??? They get to charge whatever they want right??? It's BS... All.of.it!

  6. I am very very lucky my husband works for the FDNY in NYC. We live upstate because his salary doesn't support a great life downstate.
    They offer insurance at different rates depending on your choices. We of course pay the second to highest premium to have certain things covered.
    Even that is within limits. My insulin supplies cost me nothing. Except of course my test strips cost me out of pocket because they will only offer me ones that don't link to my CGM and pump system. However, my drug plan stop covering (with a steep copayment) my other drugs at a $900 cap. Because of complications from D my monthly copays (at 30% mind you, are cost us over $1000 a month. So they find a way to get you in the end.
    I am willing to stand up. Not just for myself, but all my fellow Ds. This is just going to far with all drugs. It's gotten ridiculous. If we don't stand up nothing will ever be done about it.

  7. All true. As if we don't have enough to worry about in this life with diabetes. Our voices need to be heard.

  8. AMEN Sista!!!! My friend has a dog with diabetes and it's insulin from walmart is $20 a vile! AND WHERE is a SIDE by SIDE Pump PRICE comparison list???? Why is it we make decisions about pumps without ALL the information and COST is a huge part of it!!!! AND they should disclose if there are generic brands/tubing that is compatible AND if there will be extra costs of adhesive products to keep the device ON. Shew, I feel SO much better!

  9. Agreed. Forced this year to switch to a new meter and strip from the meter we've used since my daughter was diagnosed 7 years ago. We prefer this meter for it's reliability but the insurance company made us switch for no reason other than it was now the preferred brand.

  10. Meri I have the knowledge and desire to help with advocacy and outreach. Let me know how we can help. Please let me help.

  11. Went to pick up my 5 bottles of Novolog at the pharmacy yesterday. Took them a while to find it since whoever filed the rx put the bag of insulin vials on the counter instead of the fridge. Luckily, they gave me fresh vials from the fridge, but I couldn't help feeling really bad for the person who would be dealing with all that wasted insulin!

  12. I'm in tears reading this. I'm only 4 months in on this T1D journey with my 4 year old and while I'm navigating it all much better and we are mostly thriving, it's all so very raw. Thinking about the cost if it all, how we are going to manage paying $25,000/year for insulin/insurance/pump supplies/test strips, etc...it's all too much. Something has to give!!!


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