Insurance Woes, how will we afford this?

I didn’t know where this question “belonged” but I’ve pretty much exhausted the internet looking for solutions and just need to vent/get some feedback.

Husband switched to a new job prior to my son’s dx of T1 or my dx of T2. His insurance is perfectly affordable for him, but when you add us all, we cannot afford it. Well, we can technically afford it, but the benefits are awful. Not worth it.
200 out of each paycheck, annual deductible of 12000 to get that sweet, sweet 100% coverage. Not likely to happen.
So, we’ve been doing a medical sharing program. $400 a month, covers any healthcare event…granted we pay some upfront, then file it with the sharing company and if it qualifies, they will cover it. That’s been great for our ER visits/dx. Granted, it will NOT cover diabetes maintenance. Naturally.

But we still have zero prescription coverage. All of our son’s insulin has been samples thus far, thankfully he’s in a strong honeymoon and we’re eating low carb to keep numbers down.

I’ve looked into getting assistance for just my child (who also has autism, so, double whammy) and we don’t qualify. Our income a year seems good, which we are not complaining, but it’s all spoken for. We’re just middle class. Since the diagnosis, we’re downsizing significantly, trying to pay down student loans, looking for other streams of income, but it really doesn’t seem like it will make a dent.

I’m panicking, really. We have to fix this before he needs more insulin. If you guys have ANY tricks, tips, advice I’m missing as a newbie, please let me know.

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If your son has a formal and well documented diagnosis of autism they should qualify for Medicaid developmental disability waiver programs administered by your state regardless of your family income. I’d find a social worker who can help get that set up…


Hmm. Another mom told me about this but I couldn’t find anything about that online. Everything I read still said there were some stipulations which we didn’t qualify for. But I will look into that now for sure. There is a social worker on staff at the ped. endo who might be able to help, then.

It’s not something you’ll find the real scoop on by surfing the Internet in all liklihood… At least not without someone who knows deliberately showing you where to look. It was a nuerodevelopment specialists staff who connected us with the Children’s Medicaid care coordinator in our area. Definitely not a process we’d have had an chance of figuring out on our own. We have a high income, but qualification is based on the child’s income and assets in these programs, which are of course zero. Contacting your states department of health and social services would be a good place to start.

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Does it vary state by state? We’re in TN and it doesn’t look promising. This would be so, so incredibly helpful across the board if this were true.
Will call Social Services tomorrow, though. Our son is high-functioning/ADHD/non specific mood disorder, but he presents pretty “typical.” I don’t know that he’d qualify, but it’s worth a shot.

If he actually is diagnosed with autism by a nuerodevelopment specialist he would qualify. I believe but am not sure that every state is required by Feds to have comparable program…

But each state administers their own Medicaid program I thinj

Yes, he was first diagnosed at the epilepsy center by a neurologist about 6 years ago, then retested by his psychiatrist’s office again a year ago (hence the neat mood disorder tacked onto the end there). So, that might work.

Thank you so much for the info…feeling a bit more hopeful! :slight_smile:

Good luck, they probably call it something different in your state but I bet it exists… We have to have a care coordinator to fill out all he paperwork and make it happen…

Just call and tell them you need Medicaid for s developmentally disabled child and don’t otherwise qualify bc of your income… It’ll be a goose chase but you’ll get there

Might just need to contact a Medicaid care coordinator in your area to help get it set up too. It’s quite a process.

Regular insulin is $25/10ml vial at Walmart, no prescription necessary. While this is not a fast-acting analog, it is regular Human Insulin and an effective regime can be developed around it.

Not the optimum solution but something that can fill the gap effectively until you get something more in line with modern insulin treatment in place.


Thanks, Dave. Earlier last week I asked about R on here and was, for the most part, discouraged from using it for my child despite him being on a low carb diet it that fitting the “profile” of his diet better. We’re definitely stocking up on R in the event of an emergency, but honestly aren’t sure how to dose/if we need to dilute, etc. Something to talk to the doc about if we can ever get her on the phone.

Regular insulin is basically bolus insulin; it’s used in the same way as the faster analogs. The big difference is in speed. First, it takes longer to begin working (about 40 minutes for me, but that like everything else varies by individual). Second, its action curve is longer and slower; a slower peak and a longer “tail”. Third, it tends to be less powerful than the fast analogs, as much as a third less for some individuals. So you may need more.

Those are all characteristics that need to be determined empirically for each user, so once again like everything in diabetes, it takes time and effort to work out those variables. But it will do the job.


If you don’t mind my asking, what does your husband do? I could pass his resume along with my company, Northrop Grumman. I’m in the Software development world at the moment so have more close connections with those kinds of hiring managers, but my company is all over the world and encompasses pretty much every imaginanble career field. I think our Insurance is great and very affordable (BCBS). If interested, send me a PM and I’ll send you my email address where you/he can forward his resume. I can’t guarantee anything, but I could, and would, certainly pass his resume along to our HR Department! I’m

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How much have you really shopped for health insurance? With diabetes the best insurance deals are often the higher monthly premium but that comes with lower deductibles and co-pays. And you may be able to switch insurance if you have a triggering event (such as a change in income). It would be useful for you to check what other plans are offered through your husband’s employment as well as what is offered at You can price things out for specific things like insulin and figure out your annual cost.

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Thanks for the explanation. He’s a small guy and we’ve not quite gotten to the bolusing thing yet (apparently caught it early so he’s still chugging along with just Levemir at the moment) so the idea of injecting anything else is…somewhat scary. I’d like to think that his endo would be supportive of us trying regular and would help us with dosage, if we wanted to try it—but I don’t know. Our next appointment is coming up next month so we’ll see. If it were me, I would have tried it…but it’s harder to experiment on your child. :sweat:

He’s Supervisor/Lead designer for a point of purchase display/marketing company. He has a great job/salary. Insurance is just ehh. Thank you so much for the consideration!

Of course. Children are more problematical, not only because they are smaller, but because their physiologies are constantly changing. Calling it a “challenge” is like calling the ocean “moist”. :wink:

In any case, the day will eventually arrive when boluses become part of the protocol. Basal insulins such as Levemir aren’t designed to deal with post-meal spikes. One day that will become an issue, so just be prepared for it in the back of your mind.

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We’ve looked at that, and qualifying events…and since open enrollment is coming shortly, we’re thinking of getting someone to help us weed through the options…it’s all Greek to me but from what we’ve seen, the options are pretty bleak.

I purchased a plan for my daughter on I’m paying a little less than $200 /month for a gold plan… $0 deductible, 80/20% on labs & DME. Pharmacy copays are very reasonable, even though all insulins & test strips are tier 3. Generics are $0 copay. It also covers 1 annual eye exam & either contact lenses or glasses for under 21. I was required to buy a separate dental plan as well, but for $30/month for 90/10% plan with $50 deductible, I’m happy. (My daughter needs her wisdom teeth out & the plan is making our cost very, very reasonable. Honestly, it’s such a huge improvement over the crappy employer plan we had the last 2 years I can’t even compare them. We’re paying less than half in premiums for her for actual coverage (that drs & labs will accept) which is a huge help since our premiums plus out of pocket last year totalled just over $41k.

It really depends on what’s offered in your area, but the new calculators & other gadgets on the website make searching so much easier. You can enter the your drs names along with any meds & the search results will show very clearly which plans meet your needs. The plans available during open enrollment were much better than when I checked last summer. I’m just hoping we can get something as good for next year.


I just joined the forum and read your story. Can you use Victoza for your son?