I have two children with type 1 diabetes in their early 20s. Both are working but on our insurance and one is also attending college. They both have Dexcom CGMs and Tandem pumps. Even with insurance, the cost of supplies is killing us. Most assistance doesn’t apply to us because they have insurance. Any ideas to help with the cost. It’s mainly the pump and CGM supplies that are draining us and forcing us to sometimes “split” supplies between the kids. We run low or out of supplies often. The cost of sensors and transmitters, even with insurance, is too much. Any help will be appreciated.

Your situation highlights a challenge for many in the US – that out-of-pocket cost of diabetes care supplies depends entirely on insurance coverage, which varies widely. Some people pay very little, some – like you – pay a lot. There is no easy solution to this challenge in the US at the moment. We can offer some suggestions, however.

Since your children are adults, they could consider getting their own health insurance on the ACA Exchange in their state. Exchange policies vary in coverage and cost, but a young adult may find the cost of coverage to be affordable and the coverage better than what your policy provides. Speak with your children’s diabetes care team and explain the financial challenge you are experiencing. They may be able to offer care strategies that use different diabetes technology that is less expensive, yet which still provides the blood glucose control outcomes that you are seeking.

There are a few non-profit organizations that offer assistance for families like yours. One is The Embrace Foundation (https://www.theembracefoundation.org/). Your diabetes care team might know of others in your state.

Here are some additional recommendations from the CWD Online Community:

• “Our endocrinologist offered samples. It never hurts to ask for samples. Before covid-19, insulin was over $600 a month after insurance. So, even a few vials of insulin was helpful.”
• “Ask for help from your health care providers including your retail pharmacy. They know of patient assistance programs for drugs and supplies. And directly contact the companies whose products you use. Don’t take no for an answer.”
• “This is probably the biggest obstacle any diabetic faces. It’s incredibly hard to compare plans and compare prices when we are choosing coverage. You think you have a plan and then something you weren’t expecting pops up and you’re paying cash at a pharmacy on vacation. It’s impossible to really plan for. It’s very frustrating.”
• “To write to their local congressman about this! They should be helping!”
• “Sounds extreme but we changed jobs. Before even interviewing we asked the Hr dept to provide plan numbers and we would look into how good of coverage it would be. We found my husband a job that covered all diabetic supplies they DME pre – deductible! It was such a blessing. Expensive policy but so worth it.”
• “Sadly, I always try to start with the worst case scenario. In my case, that would be Walmart insulin and Relion meter and strips. Then I go from there. But I always make sure that, if push came to shove, and all else fell apart, I at least budget for worst case.
• After that, it’s about making choices. I firmly believe, as T1s almost always have higher than average medical costs, we usually come out ahead paying more for the better coverage, when given a choice.
• “The cost difference between Libre and Dexcom is huge! If you don’t have Dexcom coverage go for the Libre, they last longer and generally are $72 each out of pocket at most pharmacies. Sams Club offers great prices to on both products.”

Other resources:

1. The Underground Exchange of Diabetes Medications and Supplies: Donating, Trading, and Borrowing, Oh My!