A suggestion for all people with T1 and especially people w/ young adult T1


Here's my suggestion...I heard and learned a great deal about T1 from my family as I was growing up. When my mother found out I was T1, her response was to read voraciously; in turn, because of her, I did as well.

I knew a heap of information about management, dosages, insulin, maintenance, you name it.

However, I had no idea about the costs of T1. I had no idea about how significant insurance was, or how hard life could be without adequate coverage. I knew next to nothing about community resources that protect T1 people. I didn't know about how to deal with the worst case scenario.

When the worst case came, however, I was ready. I had the love of my mother and her perseverance to light my way through panic, anger, fear, rage, sickness, more fear, and then, finally, relief.

I think it might be a good idea, once a T1 kid is of age...I don't know exactly when...but before they leave high school, or when they are in the middle of college, or even before...to walk the young adult T1 people through the hoops, or have someone who has been there do it.

For instance, here are some what if situations to prepare young T1 people for:

what if your insurance raises your deductible from something affordable to something that makes it so that you can't get insulin?

how do you plan for a protect yourself against medical bills

how do you file a claim with your insurance company

how do you cope emotionally with the sudden, very painful, realization that no one cares that you are on life support, and no matter how much it costs, you are forced to keep taking it?

It's not that I didn't know about insurance or money or theory, but the thing that really took the wind out of me was that I had taken so much for granted. Sure, of course I will always have insulin and employment. Sure, health insurance will always be there. Sure I'll always be able to afford everything.

There should be some preparation for the worst case--not in a panicked way, or a fear-based way, but in a real world, here's the issue and here's how to overcome it way.

Basically, I guess I am suggesting a survival talk--at least one if not several. Knowledge is power.

GREAT IDEA.  Fortunately, I have always had insurance (the same insurance at that).  I don't know what to do if I found myself without insurance.  I hope I don't have to cross that bridge. 

Hi Crochet,You are so right about this--And insurance-I heard my daughter can be covered under mine while she goes through college.The insurance keeps going up-and I try to watch and wait to see what will happen with health care.What are the changes that will be made and will it be for the better ?

Hey. I remember feeling REALLY anxious growing up about having insurance once I was an adult. To the point where I obsessed over every little quiz grade, worried I wouldn't get into college, wouldn't get a job, and wouldn't have insurance. It feels so unfair for a child to have to worry about, but it's part of life for us T1's! I felt grateful coming from a middle class family w/ insurance and money for co-pays. Talking to friends at my T1 summer camp, some felt so anxious and burdened knowing their families were forgoing other needs to pay for their meds. So much for a kid to worry about!

As far as insurance and being able to afford necessary meds, I can't  believe we live in a country as great as ours where people have to make the choice between food and necessary meds.  It drives me crazy!!!


Very good post! Our son is a senior in high school and we have made him a spreadsheet so that he knows what he is using and how much the deductibles are so that he has a good understanding of the costs.  He fortunately will be covered under our insurance while he is in college.  He and his dad have talked a lot about what he needs to do ie once out of college maintain full time employment so that he has insurance and can afford his medications and doctors visits.

He always knows that we will always be here, no matter what, if he loses his job and cant afford his medication then we will help him; because as we all know insulin isnt a cure - it is life support.

How long can you stay on your parents health insurance? How do you leave from your parents policy to your own ? The worry is any change or loss of insurance would be much more costly to get again.Preexisting ----I think they are working on this in the new health care plan.

[quote user="meme"]

How long can you stay on your parents health insurance? How do you leave from your parents policy to your own ? The worry is any change or loss of insurance would be much more costly to get again.Preexisting ----I think they are working on this in the new health care plan.


I heard the Senate's final version requires insurance to cover kids on parents' insurance until a certain age, maybe 24? Currently, each company and policy can choose their own limit, although they typically cover college students.

[quote user="meme"]

How long can you stay on your parents health insurance? How do you leave from your parents policy to your own ? The worry is any change or loss of insurance would be much more costly to get again.Preexisting ----I think they are working on this in the new health care plan.


I just realized I didn't answer your 2nd question. If you go from one plan to another with NO gap in coverage, you shouldn't have to worry about pre-existing conditions. It's just when you've had a lapse.

Both the House and Senate's final versions don't allow companies to turn down people w/ pre-existing conditions or to charge them more than others in the plan.

Hey all, I am glad that this is important to people and that people are helping their kids to see the ramifications of insurance, just as one example.

In terms of insurance, I stayed on my parents' insurance until after college, then it was gone in one year. Before it was ended, it raised my monthly premium to an unaffordable $296 a month, and it charged a $1000 deductible, and wouldn't cover any insulin. I didn't have full time employment, so I had barely any income at all.

I grew up middle class, by the way. 


What about life insurance ? When you get married and start a family and want to buy it. Is that going to be sky high because of d ?

I am going through this now, i was very fortunate because i have had great insurance my whole life, my mom worked for a hosital and i was covered untill 24 weather i was in school or not then I had a job that had awesome insurance.. I got unlimited supllies and just had to pay $20 when i got a prescription and i had a prescription plan so I got 3 months worth of supplies at a time.. i could go to any doc and i only paid $10 a week out of my paycheck.. my job covered the rest

I now have to wait till feb to get insurance cause i started a new job. So i have been paying for strips out of pocket and my docter has given me insulin.. strips should not be as expensive as they are its rediculous that one touch test strips are $100 if u dont buy them online for 100.. come on they should be like $25 for 100 $50 the most...

I recently found out the medical insurance im getting is pretty much the worst insurance in NY, my doc even said it, & my doc doesnt even take the insurance.. someone else has a T1 daughter and they were saying something about limits on the amounts of stuff they pay for blah blah blah i got so mad im like how can i have a "limit" on supplies that keeps me alive im not understanding, honestly if i freakin knew this maybe i wouldntve taken this job it frustrates me so much! ok im done venting

Isn't it frustrating to have to compare insurance when you're looking for a new job! I guess everyone should do that, but it's more important for us.

When I applied for life insurance about 5 years ago, I had to undergo a review of my medical records. The broker told me I got approved b/c of my good control and no major complications. But, it's so expensive that I'm not insured for much. My job includes free life insurance, but it's only for $15000.

Ideally, parents w/ young children w/o health problems should get life insurance for them. If they have any health probs later, they're already on and can't be dropped. I haven't done this for my son, but I should!

I have had T1 for almost 10 years... I had health insurance for maybe 2 years of that 10. ( I got diagnosed in college, the last semester)  I can't even talk about health insurance anymore, it stresses me out too much.    

I have not been able to get commercially available life insurance.  My husband (also type 1) only has it because his parents had the foresight to realize this would be an issue for him (Gerber life).  I have a life insurance policy though my job my husband can't get life insurance, even through his job beyond the basic policy that the company affords every employee.  I could not get life insurance through his work (Union work, by the way).  I just hope that there won't be a need for it.  I have not done a thorough search for life insurance, there maybe something out there, but I have not worried about it yet because of my work policy. 

[quote user="meme"]

What about life insurance ? When you get married and start a family and want to buy it. Is that going to be sky high because of d ?



I have thankfully always managed to be covered under health insurance. The regulations on insurance companies and coverage change often. A few years back in New Jersey health insurance companies were required to have an allowance in the family plans to cover kids up until 29 I think, I can't remember if that was only if they were in school or not, but either case they had to cover them still. My Dad's plan covered me until I turned 23 at that point I was out of school and working. I stayed with my dad's insurance though as it was a better policy. Once I was on my own plan I survived it all. It was a pain in the butt. Again the things we do to survive. The things we do for our life support are ridiculous.

My biggest pet peeve is with test strips. A few month's back someone posted something on the forums about the cost of making the one touch strips and the fact that the cost of buying the strips keeps going up. It is sad. How am I supposed to believe that after x amount of years of making the same strips over and over again it costs a company $1 to make each strip and to turn a profit on them. Puhlease! However, what can we do? That is where the money is and as long as people are buying them, why not charge what they can?

I am amazed at the limits on testing supplies. It makes no sense at all from a long-term fiscal perspective. And who comes up with the limits...I'd love to have the opportunity to thank them in person...insurance companies saying, "Only three tests a day (don't make me laugh, please)" and the test strip makers saying, "Pay loads of money for them!" I wonder if Canada has test strips that don't require a first born child...and if the strips are decent there, I'd drive to Canada to get them. Insurance companies shrug and say, "It's the manufacturers..." and manufacturers shrug and say, "It's the insurance." You know, though, I really think we deserve a clear answer on why test strips are so expensive.