I'm also a long-time diabetic and discovered the same thing for myself about 20 years ago. At taht time, I think there were some very expensive insurance available, but it wasn't worth it to me -- the premiums would've been so high, I could invest that money myself and grow my own coverage -- wihtout their commissions & fees. I have chosen to get the maximum that I can from my employer and to look into alternative investments that I view as insurance.
Recently, my employer increased the maximum (some multiplier of our salary) that individuals could buy and, of course, I jumped at that chance.
It would seem that over time, with Type 1s living long & healthy lives, that our "actuarial risks" would be adjusted downward. If we've lived with Type 1 for 20, 30, 50, that "should" count for something.
Perhaps others will have suggestions.
My husband and I were eventually able to find a company that would offer a small amount of life insurance for me. It is fairly expensive, though. I would suggest that you contact the Juvenile Diabetes Research Foundation at www.jdrf.org and ask this question. There is a staff member who specializes in questions such as this one who may be able to offer some information. Go to the Online Diabetes Support Team link and fill out the questionnaire... your request will be sent to the proper person. Good luck to you both.
Thanks to you both for your suggestions. I'll look into that.
Just wanted to share this...my daughter who was diagnosed at the age of 21 months has had life insurance through the Knights of Columbus and it is very reasonable. I believe that when she's out of college (or 21, whichever comes first) she will be able to plunk more money onto the policy if she chooses. My husband doesn't belong but his father does and that is what made her eligible. This may be worth looking into if you are catholic & want to join or are related to an existing member.
I also had trouble and the only reasonable policy I could find was a term life policy and it was reasonable but in the long run it wasn't worth it b/c it only lasted for 5 yrs so we did finally let it laps last year and I am covered @ my job so we are goting to try to invest and make it work that way. Good Luck to you and your husband.
Thank you for your suggestions. We have looked into some other choices, and like what was mentioned, it wasn't worth it. We have took out additional IRA's, etc. to invest in for some extra money when needed. Thanks again!