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Hi there,

Just recently had a change of circumstances, financially :)

I'm English by birth and up until I was 24 lived there, and in truth the medical industry in the US is still somewhat of a blur to me.

A divorce a few years ago set me off on a rather interesting voyage.

My Father was until 2 months ago sending me a monthly payment to help me afford my supplies...Bit of a different story, but we aren't very close. It was quite a surprise when he helped at all, but he's just stopped without warning and so I have to deal with it.

I'm not absolutely broke. I have a job and insurance...Just not much left afterwards to use it and purchase supplies with.
I don't think it appropriate to discuss my exact finances, but the upshot of it is, I'm stuck living where I am and I cannot move somewhere cheaper due to my children and my situation with my ex wife and so my question is:

What happens when you can't afford your supplies? I imagine people here don't simply die, so do I back off from pumping and simply go to an ER when I have no insulin left, or what?
Do people simply keep going to the ER and then don't pay the bills?

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In the US the cost of health care, including supplies is very high. There is a lot of profit being made and the people that actually pay for supplies subsidize those that have better insurance coverage and those that don't pay. The systems is basically unfair to those that have crappy insurance or none at all.

In the end, we do what we have to do. There is a safety net in the US, you can seek out care in the ER when you are indigent and the government (both state and federal) will assist you when you reach certain poverty or disabled levels. But in between, you are expected to just deal with it. And about the only way to deal with it is to make some compromises and spend more time and effort. For one thing, you can go back to MDI at greater savings and even further you could use R/N insulins which are available for $24/vial at Walmart.

I worry about my health care when I get older and retire. I don't have insurance that will carry over into my retirement years and these issues weigh heavily on me.

Same here. The cost of health care and supplies is out of control. And, sad to say, the income limits to get help with medical cost is so low that you almost can't have a job to qualify. You pretty much have to be destitute to qualify. My brother has been through this...he's type 2 and on an older less expensive insulin regimen because of it.

I just don't get it. A country of such abundance every where you look but we put people in a position where they are making decisions between health care or food.

I share bsc's concerns over retirement years. It appears that I'll be working long after I'd like to retire just because of insurance coverage. It weighs heavy on me and my husband too.

Start with this:

You can contact your pump supplier and the manufacturer of your insulin to see if you can get discounted supplies. They will have you fill out a variety of financial disclosure forms to show what your income level is, and like Medicaid programs they may not be willing to help until you're pretty much destitute. But once you're at that point, you should be able to get some sort of assistance. Be prepared, though—it is going to be difficult and frustrating and you will be talking to a variety of people who will likely have differing levels of valid information for you. Document EVERYTHING you are told and keep good records. Keep every receipt for any form of medical supplies or services you purchase.

That's my best advice. Good luck to you.

I am actually going through this same thing. I am going through a divorce and since I am now not the main car giver of my children (my ex is) I lost my medicaid. Its scary and Im not sure what is going to happen but I pull from where I can. We have a local diabetes charity here which can get minimal supplies when they can. I have been to the ER many times over the years with high sugars due to lack of insulin and yes those bills still remain unpaid. It irritates me that I am a 29 year old diabetic and really have no way of getting supplies. I am currently looking for work and am hoping to find a job with benefits but for now I am a scavenger in the diabetic world. Good Luck to you!!

Hi there,

I work full time and also have half custody of my kids.
I find that after I've paid for what most I presume to be minimal living costs (rent, gas, insurance) I've literally got nothing left.
I'm told my co-pay of 15 for doctors visits is actually pretty good, but not if you use it three times a month. Not when that combined with only 80 percent coverage of pump supplies.
I can't afford to use any of it.

My eyeglasses prescription is over 4 years old now.
It seems to be one of those situations where the people who are fortunate enough to have very very good coverage with enough disposable income to use it, rarely need it, as their success and good health go hand in hand. They have time to commit vast gobs of time to a career and a job that will then give them these benefits, and once they have them, they quickly presume everyone is capable of doing exactly the same.

I'm not complaining, but I'm frustrated. From my perspective I feel utterly crippled financially and can't get a foot up.
I don't want to rent. I would love to go back to house ownership. I don't want to be stressed out of my head wondering if I can afford things that will help keep me healthy.
I waited basically all of my life for continuous glucose monitors to come around, and now they are I don't think I can continue to afford the sensors.

My other perspective is from England where I grew up. The NHS is continually bashed as not being a viable option for the USA, yet it works. I know pumpers from the UK who have everything covered. The healthy who aren't using the medical industry pay for their dotage when they will need it and pay for a society taking care of it's people in it's entirety rather than it being survival of the fittest.

Unfortunately I don't qualify for low income support. I earn 29 thousand a year, which puts me way way higher than low income. Unfortunately they get those numbers from national averages, not from a person by person basis, and where I am forced to live isn't cheap.
In an ideal world I would simply move to a cheaper location, but that isn't an option. My children are here. I can't relocate them and I'd rather die than leave them.

Not wanting to sound overly dramatic, but I feel like going off the pump after nearly 30 years as a type one would be a death sentence. It's already so complicated. I can imagine unfortunate effects very quickly piling up if I were to dare to go back now. I don't have it easy with my control. I'm really made to work for it.

I will live. I just have to deal with it.
Thank you for your perspectives. It's nice to hear.

Rant over :)

Glad Elizabeth included the link for patient resources. Hope there's help available there & you qualify for assistance.

Going off the pump may be a viable option to save money. More important to be able to afford insulin & syringes are cheap. I don't know how people afford the co-pay on such expensive pump supplies. US healthcare is in a shambles & a disgrace.

Sorry you're dealing with this.

It's probably best just not to think too hard about these things. You've just got to do your best. I've been pumping with a kid, no help, no money, and no insurance for the past year. It's not so bad. There are plenty of T1's out there in places like Nigeria and India, managing under far more difficult circumstances. Also, wealthy people here seem to have it made, but in reality, they are often swimming in debt, under great stress, and in very poor mental and physical health.

I know a lot of people disagree, but I think that a CGM is pretty frivolous. I wish I had the money back I spent on mine. I find it more effective and cheaper to take more frequent finger sticks. Beyond that, there's always collecting bottles and cans or you can get a squeegee. Welcome to America.

I'm sorry you're going through this. You may want to look around for a sliding scale clinic. The one around here finds the cheaper supplies and their goal isn't to make a profit. I get my strips from them. They gave me my meter and sell the strips for just over $20 for 100. That is far cheaper than even walmart. Since I don't use insulin or a pump yet I don't know what they can do for those people.

You may also want to check down at the welfare office. Even if you don't qualify for medicaid they often have info on where you can get other assistance.

Since you are in a high cost of living area and have 50% custody of your kids you might want to apply for welfare, there may be something that covers you. If you get some food stamps that would allow you to buy your supplies.

You may also want to check with charitable organizations in your area, churches and such often have a little money they can hand out to help with necessities.

It seems to me that there is all kinds of help for those that have no interest in helping themselves except that they have figured out how to milk the system. Those who are fighting to manage but don't quite make enough to pay for all their needs are left out in the cold.

Yeah. I want the government to help me buy diabetes supplies, but I'll be damned if my tax dollars are going to those leukemia freeloaders.

LOL. My two nephews have cystic fibrosis. They're freeloaders also:)

Just a thought - you may also want to talk to your doctors and explain that you're struggling to afford supplies. I have gotten the occasional free vial of insulin, test strips and meters from my endo and CDE. They get samples from the pharma reps and will give them out if you ask and they happen to have any.

They may also have some sort of way to get you insulin at low or no cost. At least ask. I was in my CDE's office one day and she was talking about filling out a form for a patient who was in the Medicare gap financially where his meds were not covered. The patient told her he was going to have to ration his insulin until he was covered again. My CDE was getting the endo to sign a form "to get him his insulin" so I don't know if they do free or reduced in certain cases but it's worth asking about.




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