Pharma is broken, peeps. U.S. healthcare is broken. Executives and government are all pointing the finger at each other. Nobody wants the blame as to why the system is broken. Somebody is profiting, and that is being put ahead of people's lives. I don't really care who falls on the sword and takes the blame and gets it fixed, just somebody, anybody. Here is a little window into type 1 diabetes in America (T1D).
Managing type one diabetes in America is exhausting. Especially if you are a middle class family and on a high-deductible insurance plan through your employer (which 47% of Americans are), oh and you kind of need insulin to... I don't know... live.
So in our little family of four, Coach Man is the type one diabetic. For those of you wondering, that's the type considered juvenile and genetic, and yes onset came when he was young, and no he can't fix it with diet and exercise. However, those things do help his health, as they do any person. I just thought we'd cover those questions early on, because they always come. It's always been an expensive chronic condition to manage, but never more so than today. Something has got to give.
Last year, we paid between $800.26 and $1033.76 monthly for insulin. Just insulin, no supplies or doctor appointments in that figure, and that is with a GoodRx coupon in the mix. We were denied for a manufacturer's assistance program, because guess what? We have insurance, even though it is horrible insurance. Guess what else, because we use the GoodRx coupon to be able to half way afford to live, none of that goes against the prescription deductible. None.
This year, we are down to $767 monthly for just insulin, no supplies or doctor appointments in that figure. We are getting one box at $25 a month. Woot, but he uses 4 boxes a month. The drug manufacturer for his specific insulin had mercy and developed a new program for high-deductible insurance plan sufferers. It covers one box.
Back story. Coach Man changed jobs a year ago last January. He works within our local public school system with special needs children. He adores his job, and he's really good at it, always has been. He got a chance to go back to his dream school system last year. It was a slight pay increase, and yes we went in knowing about their new high-deductible insurance plan. We created a budget / plan and thought we were good to tackle that hiccup. Yes, there would be prescription discounts until the deductible was met and an employer contribution to boot. We thought not ideal, but we'll deal. Our copay on his needed items had always been a bit higher than other things due to the tier of insulin, so we'd just figure it out. Well, if only diabetes wasn't in the mix, and that prescription deductible wasn't $5000, which we didn't know going in. I so wish we had.
After, the 90 day probationary period, when the new insurance was in full force, we inquired at the pharmacy what the new price would be. Over $2000 for a 30 day supply. I actually think it was somewhere between $2100 and $2400. I was in shock and didn't write it down for prosperity. I was sure we weren't hearing correctly. An insulin he had been controlled on for years was not preferred and not on the carrier's formulary. After trying a few solutions that didn't pan out, he switched to a different insulin that was a bit more affordable.
It floors me that a doctor can prescribe what they feel is best for you and your health, but because that drug is not on the insurance carrier's formulary (list of prescription drugs that offer the greatest overall value - value for who? Oh yes, them, as in the profit they make), you have to jump through hoops like a circus performer to get it.
Coach Man had been controlled for years on one type of insulin and had recently had the best A1C he has had in years, but because of insurance, a formulary list and affordability for us, we had to change to a different one. Does it make your head spin? It does mine.
All of 2018 we managed. We even explored other insurance options. The Healthy Indiana Plan (HIP). We make too much. Marketplace. Nope, his employer offers insurance, sorry, no go. Private. Nope. Sometimes I feel like I am just banging my head against the wall.
A couple of weeks ago Coach Man came down the stairs for the start of the work week and said to me, "At the beginning of the week, you feel like you matter, are doing a good job and making a difference, but by the end of the week your district administration reminds you that you don't matter at all."
It made my heart fall for him and I totally understand where he's coming from. He's coming off of two, yes count them, two ZERO dollar paychecks because of Christmas break and the snow days and EVERYTHING being eaten up by the cost of the $1200+ per month insurance plan that pays NOTHING. He questioned HR and all they said back, was oh by the way, "...you owe us $300 more to be even on your insurance portion - want to write us a check?" Sigh. For his specific full time position, he is only paid for work days, not breaks or snows days outside his control.
I wonder to myself if there was a healthcare professional on the school admin/board team that decided the insurance plan? Did they see that $5000 prescription deductible? Did they think about school employees that have T1D, but love their job? Yep, love that Wellness Center they started, but guess what? It doesn't serve T1D people at all.
I know they desire for their employees to be 100% everyday - their healthiest - to do their jobs, be there for their students, but as an employee, if you are forced to change your life saving medication and cut corners just to be able to afford your care, then is that really possible?
I wish they would have looked at it more holistically - at all parts - all situations.
In the last year, not only have we dealt with high insulin costs, but Coach Man has suffered some unusual low blood sugars and the beginning of diabetic retinopathy. Yes, we are talking with his doctors and trying to pinpoint what is causing these concerns. We are preventative treating with an eye surgeon and eye injections, but last year, he had two eye bleeds that have significantly affected his vision. Was it the change in insulin? Was it possibly that his doctor wanted a few more eye injections last year and we just couldn't afford it? Those visits are $1300-$1500 per time, and you guessed it, his crap insurance isn't covering it. I don't know what played into it for sure, but I know care affordability for a T1D person in America sucks, and people are forced into very hard choices.
There's got to be a better option.
So why should you care? You may not be a diabetic today, but what if you are five or ten years down the road? What if your on-a-fixed-income grandparent is one? What if your new baby is one? What if you ten year old son or daughter is suddenly a T1D? Do you want them rationing their insulin? Do you want them picking and choosing which doctor's appointment is most important and what can wait?
Over this last year, it's been laughable. The day the insurance representative gasped on the phone when she looked at our plan and our prescription deductible. I said is that crazy high? No response. I know she can't comment, but her gasp was enough. Each time I get a new pharmacy tech at checkout, and they whisper do you know the price today is...? Yep, I'm well aware. The day Coach Man's brother was with him at prescription pick-up and said, "You pay what?!" This is our normal.
Why is it Europe doesn't have this issue? Why not Canada? Why is insulin so much cheaper in those places, and here it's more than your mortgage payment? Same insulin, same manufacturers. Did you know T1Ds cross to Tijuana to stock up on insulin? Same insulin, same manufacturers there too. Hmmm... I'm calling bull shit on U.S. pharma, insurance companies and our government.
In the U.S., it's all in who plays the game best. Every few years, big pharma bids and pleads their case to insurance carriers to make formulary lists for treated conditions. Pretty sure it's the good ole boy network. It's who's scratching who's back and who has the lowest bids. I find it very interesting which manufacturers are on Coach Man's insurance formulary and which are not. Guess bidding didn't go to well for one large company. Seems they have bigger issues these days too. They are currently facing fraud allegations.
What would better healthcare in U.S. look like? I'm bringing my chair to the table, peeps. This current situation is ridiculous. When his school insurance policy is up for bids and renewal, you better believe admin and board members are hearing from me. State legislators, expect phone calls and letters until you sit down with me. When insulin drug manufacturer executives are speaking in my state, better believe I'll be there. I'm not backing down.
Families deserve better. The people of America deserve better. I'm chasing life, liberty and the pursuit of happiness, peeps. Shouldn't we all? And in 2019, for this household, that starts with #insulin4all (that is affordable insulin for all).
Update: Feedback to our T1D story from readers - https://delightstruck.blogspot.com/2019/03/faith-friday-feedback-to-our-familys.html
Managing type one diabetes in America is exhausting. Especially if you are a middle class family and on a high-deductible insurance plan through your employer (which 47% of Americans are), oh and you kind of need insulin to... I don't know... live.
 |
| 2017 photo, nope not school system he works at now |
So in our little family of four, Coach Man is the type one diabetic. For those of you wondering, that's the type considered juvenile and genetic, and yes onset came when he was young, and no he can't fix it with diet and exercise. However, those things do help his health, as they do any person. I just thought we'd cover those questions early on, because they always come. It's always been an expensive chronic condition to manage, but never more so than today. Something has got to give.
Last year, we paid between $800.26 and $1033.76 monthly for insulin. Just insulin, no supplies or doctor appointments in that figure, and that is with a GoodRx coupon in the mix. We were denied for a manufacturer's assistance program, because guess what? We have insurance, even though it is horrible insurance. Guess what else, because we use the GoodRx coupon to be able to half way afford to live, none of that goes against the prescription deductible. None.
This year, we are down to $767 monthly for just insulin, no supplies or doctor appointments in that figure. We are getting one box at $25 a month. Woot, but he uses 4 boxes a month. The drug manufacturer for his specific insulin had mercy and developed a new program for high-deductible insurance plan sufferers. It covers one box.
Back story. Coach Man changed jobs a year ago last January. He works within our local public school system with special needs children. He adores his job, and he's really good at it, always has been. He got a chance to go back to his dream school system last year. It was a slight pay increase, and yes we went in knowing about their new high-deductible insurance plan. We created a budget / plan and thought we were good to tackle that hiccup. Yes, there would be prescription discounts until the deductible was met and an employer contribution to boot. We thought not ideal, but we'll deal. Our copay on his needed items had always been a bit higher than other things due to the tier of insulin, so we'd just figure it out. Well, if only diabetes wasn't in the mix, and that prescription deductible wasn't $5000, which we didn't know going in. I so wish we had.
After, the 90 day probationary period, when the new insurance was in full force, we inquired at the pharmacy what the new price would be. Over $2000 for a 30 day supply. I actually think it was somewhere between $2100 and $2400. I was in shock and didn't write it down for prosperity. I was sure we weren't hearing correctly. An insulin he had been controlled on for years was not preferred and not on the carrier's formulary. After trying a few solutions that didn't pan out, he switched to a different insulin that was a bit more affordable.
It floors me that a doctor can prescribe what they feel is best for you and your health, but because that drug is not on the insurance carrier's formulary (list of prescription drugs that offer the greatest overall value - value for who? Oh yes, them, as in the profit they make), you have to jump through hoops like a circus performer to get it.
 |
| Couldn't resist chance to use actual pic of Coach Man at the circus. Ha! |
Coach Man had been controlled for years on one type of insulin and had recently had the best A1C he has had in years, but because of insurance, a formulary list and affordability for us, we had to change to a different one. Does it make your head spin? It does mine.
All of 2018 we managed. We even explored other insurance options. The Healthy Indiana Plan (HIP). We make too much. Marketplace. Nope, his employer offers insurance, sorry, no go. Private. Nope. Sometimes I feel like I am just banging my head against the wall.
A couple of weeks ago Coach Man came down the stairs for the start of the work week and said to me, "At the beginning of the week, you feel like you matter, are doing a good job and making a difference, but by the end of the week your district administration reminds you that you don't matter at all."
It made my heart fall for him and I totally understand where he's coming from. He's coming off of two, yes count them, two ZERO dollar paychecks because of Christmas break and the snow days and EVERYTHING being eaten up by the cost of the $1200+ per month insurance plan that pays NOTHING. He questioned HR and all they said back, was oh by the way, "...you owe us $300 more to be even on your insurance portion - want to write us a check?" Sigh. For his specific full time position, he is only paid for work days, not breaks or snows days outside his control.
I wonder to myself if there was a healthcare professional on the school admin/board team that decided the insurance plan? Did they see that $5000 prescription deductible? Did they think about school employees that have T1D, but love their job? Yep, love that Wellness Center they started, but guess what? It doesn't serve T1D people at all.
I know they desire for their employees to be 100% everyday - their healthiest - to do their jobs, be there for their students, but as an employee, if you are forced to change your life saving medication and cut corners just to be able to afford your care, then is that really possible?
I wish they would have looked at it more holistically - at all parts - all situations.
In the last year, not only have we dealt with high insulin costs, but Coach Man has suffered some unusual low blood sugars and the beginning of diabetic retinopathy. Yes, we are talking with his doctors and trying to pinpoint what is causing these concerns. We are preventative treating with an eye surgeon and eye injections, but last year, he had two eye bleeds that have significantly affected his vision. Was it the change in insulin? Was it possibly that his doctor wanted a few more eye injections last year and we just couldn't afford it? Those visits are $1300-$1500 per time, and you guessed it, his crap insurance isn't covering it. I don't know what played into it for sure, but I know care affordability for a T1D person in America sucks, and people are forced into very hard choices.
There's got to be a better option.
So why should you care? You may not be a diabetic today, but what if you are five or ten years down the road? What if your on-a-fixed-income grandparent is one? What if your new baby is one? What if you ten year old son or daughter is suddenly a T1D? Do you want them rationing their insulin? Do you want them picking and choosing which doctor's appointment is most important and what can wait?
Over this last year, it's been laughable. The day the insurance representative gasped on the phone when she looked at our plan and our prescription deductible. I said is that crazy high? No response. I know she can't comment, but her gasp was enough. Each time I get a new pharmacy tech at checkout, and they whisper do you know the price today is...? Yep, I'm well aware. The day Coach Man's brother was with him at prescription pick-up and said, "You pay what?!" This is our normal.
Why is it Europe doesn't have this issue? Why not Canada? Why is insulin so much cheaper in those places, and here it's more than your mortgage payment? Same insulin, same manufacturers. Did you know T1Ds cross to Tijuana to stock up on insulin? Same insulin, same manufacturers there too. Hmmm... I'm calling bull shit on U.S. pharma, insurance companies and our government.
In the U.S., it's all in who plays the game best. Every few years, big pharma bids and pleads their case to insurance carriers to make formulary lists for treated conditions. Pretty sure it's the good ole boy network. It's who's scratching who's back and who has the lowest bids. I find it very interesting which manufacturers are on Coach Man's insurance formulary and which are not. Guess bidding didn't go to well for one large company. Seems they have bigger issues these days too. They are currently facing fraud allegations.
What would better healthcare in U.S. look like? I'm bringing my chair to the table, peeps. This current situation is ridiculous. When his school insurance policy is up for bids and renewal, you better believe admin and board members are hearing from me. State legislators, expect phone calls and letters until you sit down with me. When insulin drug manufacturer executives are speaking in my state, better believe I'll be there. I'm not backing down.
Families deserve better. The people of America deserve better. I'm chasing life, liberty and the pursuit of happiness, peeps. Shouldn't we all? And in 2019, for this household, that starts with #insulin4all (that is affordable insulin for all).
-Jen
Update: Feedback to our T1D story from readers - https://delightstruck.blogspot.com/2019/03/faith-friday-feedback-to-our-familys.html
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