One Family, Three T1 Kids, Cost of Insulin

Type 1 and LADA
1

I have a Facebook friend who has three type 1 sons. She is posting about the unfairness of the cost of insulin in the US. It is impossible for many people in our country to afford the insulin that they need to survive. Why does it have to be this way? Can’t something be done to make insulin affordable?
Here is my friend’s blog:

"What if you had to inject a substance into your child multiple times a day or your child would die.

What if that substance cost only dollars to make, but you were charged hundreds of dollars for only one tiny vial. Once opened, one vial is good for only 30 days, although it is usually out in a couple weeks. Sometimes one.

What if you were late injecting that substance it could cause serious, lifelong complications to your child’s body.

What if you injected just a few drops too much and your child had to go to the emergency room.

What if your insurance denied this substance to you and you had to pay out of pocket to keep your child alive.

What if you had more than one child that needed this substance, day in and day out.

What if you lived in the US you had to pay $400 a vial for this lifesaving substance, but if you lived in Canada you only had to pay $30…and in many other countries it is free.

What if you had to pay to keep your child alive, every day. Every hour.

What if you knew that children were dying, or suffering, in the United States because their family couldn’t afford this substance.

What if one of your children had Type 1 diabetes? Because if one of your children did have it…this would be your truth.

Type 1 Diabetes can strike any person, at any age. It is an autoimmune disease. Your family can have no history. You could be vegan, breastfed until you were 5, and Olympic swimmers and you could still just as easily be at risk.

This is my life.

I have three boys with Type 1 Diabetes.

My boys must inject insulin into their bodies multiple times a day to stay alive, and the people that manufacture this insulin raise the price of it year after year.

The same insulin. Price raised. Every year.

Just because it doesn’t effect you doesn’t mean it isn’t wrong. Disgusting. And cruel.

What if your life changed in an instant and this was your reality?

What if it were you? What if it were your baby?

There is no what if.

This is happening.

Please don’t turn away.

It may be your family’s reality one day.

My children’s lives are not for profit. And yours shouldn’t be either."

9 Likes
2

And after Banting and Best made sure their miracle drug would be available to ALL at a minimal cost, the corporations “recombined” them to make sure they could make exorbitant amounts of money. They also negotiated among themselves to remove most of the low cost versions to be able to monopolize the market with their “improved” versions. Be sure to read Richard 157’s other posting today at One Family, Three T1 Kids, Cost of Insulin

4 Likes
3

I really feel this woman’s pain. I’m only one person in the family with diabetes and I’m struggling to pay for it.

I have pretty good insurance but the copays go up all the time. I’m close to retirement age and wondering how I’m going to pay for it all when the time comes. It’s freightening.

2 Likes
4

21 posts were split to a new topic: Paying for insulin with Medicare

25

There were very few replies to my original post, and then my thread was hijacked. So many many replies on different subjects. That did not happen on the other sites where I made the same post. Why did it happen here?
This has happened before on TuD. I am disappointed!!

2 Likes
26

Sorry, Richard. The cost of insulin is a problem that folks who have coverage don’t understand, I think. Your fb friend didn’t talk about the cost for checking her children’s glucose which is necessary for dosing and treatment, but I know that cost is also a ridiculous mark up.

Being a market for profit is sometimes a worse condition than the Diabetes itself :frowning:

Thank you for sharing the post with us.

1 Like
27

Perhaps a moderator (@Stemwinder_Gary) could split this thread so that posts related to insurance coverage after retirement were placed elsewhere. That may help us redirect our attentions to the original post.

I actually do think all of the posts were related to dealing with problems with coverage. People were likely just trying to relate to the post and it got off track.

I don’t think anyone intentionally meant to disregard your post @Richard157.

I can see that providing insulin could be an enormous burden for a parent with 3 children with type 1. It’s unfortunate that she struggles getting coverage for this most basic need, and I agree that it’s terrible that she has to worry about that in addition to all the other concerns of raising children.

2 Likes
28

Thank You @katers87 I have taken your excellent suggestion and split this topic. @Richard157’s topic does deserve to be heard and discussed on it own merits

3 Likes
29

@Richard157 It is really sad that the medication you need to keep your children alive is so unaffordable. And what makes me angry is that it’s the pharma companies are using insulin - the medication needed to treat a life-threatening disease to make money and increase profits. It’s sickening.

Your friend needs to move to Ontario. :slight_smile: Not only is our insulin cheaper here, but our government just decided to pay for all children’s med’s until they are 25.

2 Likes
30

Hi Richard,
I have a specific and practical suggestion for your friend and others. That is, use human insulin – i.e. Regular and NPH. In many (or maybe most, but not sure) states 10mL (1000U) vials are available over-the-counter at Walmart for $25 each – that’s the cash price, by the way, without insurance payment. This appears to be the result of a public-benefit joint agreement between Walmart, one of two of the insulin makers (Novo-Nordisk and Eli Lilly), and the various participating state governments. Even if one is unfortunate enough to be located in a state not engaging in this program, human insulins are by far the most inexpensive.
I am a monogenic diabetic and use only these insulins. I well understand the much more difficult requirements of dealing with T1D children, and the discipline required to avoid ketoacidosis, and so forth. I am also well aware that many or most T1D children are now using pumps and CGMs, but possibly not your friend’s children.
Anyway, it is quite feasible to manage T1DM with only human insulin and syringes for injection. This was done for many decades. The longer-time profile analogs are superior to NPH for T1Ds, but nevertheless not necessary for basal insulin IMO.
On an appropriate diet (very low-carb with adequate protein) Regular insulin is truly the best-matched to the meal absorption profile – all insulin-deficient diabetics (i.e. all but MODY2) SHOULD be using Regular IMO. The short-acting analogs are designed purely in a futile attempt to compensate for dietary carbohydrate and consequent hyperglucagonemia, and are exceedingly inappropriate for the time profile of dietary protein absorption (which should dominate endocrine-pancreas stimulation in any meal eaten by a diabetic).
I use NPH twice daily (once before bed and once in the morning). A T1D probably should be injecting at least three times daily. Richard Bernstein’s book (Diabetes Solution) discusses using NPH with children. It does also have the advantage of straightforward dilution, which most of the analogs do not.
Understanding the endocrinology of diabetes as I do, I really am more than unimpressed with the actual benefits of almost all of the modern technology for devices and medications both. And sure, they are quite expensive to boot. Regular and NPH will do fine for T1DM, with a bit more required effort in the case of children admittedly. Total cost per year/child (for syringes and insulin) should not be more than four or five hundred US dollars with Walmart-sold supplies. I also recomend their store-brand syringes, by the way – these are very inexpensive and quite functional. I use them.

3 Likes
31

Hello @Mac2, I used NPH and Regular for many years and I did quite well with them, but I had big swings with a roller coaster pattern with my tests. With Humalog and a pump that is no longer a problem, unless I forget to bolus. :roll_eyes:
I had the beginning stages of neuropathy and retinopathy while using NPH and Regular, because of the swings. With the much better management provided by Humalog and my pump, my retinopathy disappeared, and it has never returned. My neuropathy is still present, but it is not so bad. I do not need any medication for that.
I am glad you can have good management with NPH and Regular. I have online friends who also use those human insulins, but most of us T1D’s need a fast acting insulin to avoid roller coaster patterns, and complications.

4 Likes
32

Couldn’t agree with you more @Richard157!

I wonder if this may not be as high of a priority for someone with monogenic diabetes. I think most people with monogenic diabetes still produce some insulin. It seems like that could significantly help.

1 Like
33

Both myself and my daughter are T1’s and my insurance up to 3 years ago covered our insulin and test strips reasonably well. I have “excellent” but expensive coverage that I had been content with. For no explained reason costs edged up so that now I would pay $100 out of pocket per vial of Novolog. I have started faxing a prescription to Canada and am paying $50 per vial, no insurance required. I also get my test strips ( Contour Next ) from Amazon, again much cheaper using no insurance. I am thankful to have discovered a cheaper option, and have the means to afford it, but it is impossible to comprehend how these items are more expensive when using Horizon Blue Cross.

1 Like
34

The price of insulin is horrendous, and unless we all ban together, the drug companies will continue to make their money. They could not care less if someone dies, although that would dip in to their profit margin if they lost too many of us. Can your friend apply for state or federal aid to help him/her defray the cost of medications for the children? Has he or she contacted local and state legislators? Until we have systems in place to once again bring attention to these pharmaceutical rip-offs, I see no reason why they will ever stop raising their prices for these life-saving drugs. Sad, but true. This is the state of medication in America.

2 Likes
35

I buy my insulin ($48 per vile of novolog) through Marks Marine Pharmacy/internet in Vancouver, BC. It’s a VERY reputable pharmacy who will ship the insulin via Canada Post/UPS.

36

@Bob41, Do you live in Canada? If you are in the US, was it difficult to order insulin from that pharmacy? There are so many people in the US who do not have insurance like I do. They would love to order insulin from Canada.

1 Like
37

I live in Pennsylvania and order my insulin from Canada = $48 a vile for Novolog (Novorapid in Canada - SAME COMPANY) vs. $300 per vile. This is my fixed income godsend

2 Likes
38

Beyond Type 1, including TuDiabetes, does not endorse or promote any specific site where diabetic supplies can be purchased.

The TuDiabetes Administrative Team

39

The price is causing people to ration their insulin, which as has been said and concurred by all doctors is life jeopardizing. Jesse Lutgen is a name that I unfortunately read about concerning this. Which is why doctors need to teach about alternative management with promises, such as eliminating complex carbohydrates completely. It may be tougher with younger children though, understandably.