High deductible and can’t afford CGM or pump for son

My son was diagnosed December 2019 and is 14 years old. He is on my husbands insurance with a $5,000.00 deductible. We can’t afford to pay so much out of pocket for his Dexcom and omnipod. We are paying for the libre 14-day out of our pocket and with as much as we have paid this year on $536.00 has went toward our deductible. My husband has health issues also and is on multiple meds. Are there any assistance out there for those who are not considered low income and have employer insurance but are still having to pay very large amounts on medical bills.

@Jfostersmom, Lee Ellen, first welcome to Type ONE Nation.
–The first place I would suggest is:

–The next place I would fish is with the manufacturers. I would look long and hard at the Dexcom/Tandem partnership where the CGM and pump communicate back and forth. Dexcom & the maker of Omnipod (Inulette) have agreed to integrate but that appears to be delayed because of C-19.
– Others may be able to help more if your general location were known. Check for local chapter’s of JDRF as there may be local foundations able to help.
– Does the health insurance reset every calendar year or does it reset deductible on plan years? So, when are you going to need to pay a new deductible. This may impact a local foundation’s participation.

Lee Ellen, what ever happens, please, keep us informed. Sharing is how we all learn.

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@Jfostersmom, I’m sorry for your situation - that must be a heavy burden. I don’t know if it could be any help, but diaTribe recently shared an article about the ADA health equity initiative, which, if successful, sounds like it would help.

Please consider your health care needs when you vote. If you decide to try something like a go fund me page to try to cover the initial cost, post a link to this thread and I will donate.

@Jfostersmom Hi Lee Ellen, and welcome to the JDRF TypeOneNation Forum!

A vial of insulin and syringe with needle, or insulin pens , is a viable solution and the least expensive. And, when used with a BG Meter can be very effective diabetes management. Yes, it takes work.

First because pumps and CGM were not available, and the because of high cost, i didn’t get my first pump until after injection method for 47 years, and waited 62 years for a CGM- yet for years prior to these miracle tools maintained an HbA1c below 6.5%. Yes, these new pumps and CGM are ready awesome, but they are not the only way to EFFECTIVELY manage diabetes.

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Omni pod does discount some. Contact them, fill out the financial forms. It might not be a ton, but every little bit helps. I am in a similar situation. Insurance doesn’t touch the omni pods until the deductible is met. I usually have to pay for 10 boxes out of pocket.

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Just a few things from my experience. Not sure if any will work for you, but anything is worth a try. Try with both Medical and Prescription coverage. A lot of T1D supplies are starting to have better coverage through your prescription benefit than your medical. Check out the insurance companies formulary list to see if any of your supplies are on the formulary. If so, you should be able to use your benefits before deductible is met. If it’s not on the formulary, lobby the insurance company and the employer that provides the benefits to get it added to the formulary. The challenge is that the tax code is not very clear on whether insurance companies can pay for these supplies before deductible is met on a high deductible plan. JDRF is lobbying for them to clarify this, and insurance companies are starting to do it. We were in the same boat 2 years ago. In 2019 our prescription provider started paying for them pre-deductible. And, they started paying at 100% from day 1 (when I got the first $0.00 statement, I was sure it had to be a mistake). So, they can do it, but they need to be pressured in some cases. Another option is to go to Costco and tell them you are uninsured and have them price it. It is frequently cheaper than your co-pay.

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Also check with your doctors office. I routinely donate my older equipment to be reused when I upgrade. I also have learned that as posted above my prescription plan has much lower costs for my cgm supplies.

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Sorry to hear about the financial struggle with getting the best treatment for your son. One resource could be CHIP - The Children’s Health Insurance Program. CHIP is a program administered by the United States Department of Health and Human Services that provides matching funds to states for health insurance to families with children. The key would be eligibility. Don’t know if your very high deductible would factor into eligibility. I found a helpline for PA by Googling CHIP + PA. You would want to find the contact # for CHIP in your state. Best wishes in finding the necessary resources.

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Lee Ellen, At age 69 I have 64 years of T1 management experience. I wanted to add a note of empathy for you as a Mom who perhaps may be still hurting over the loss of a diabetes-free life for her son. I have always thought that I have a good life even with T1.

I’m sure there are parents of children with T1 who can identify with feelings over receiving their child’s diagnosis. I don’t know what my Mother’s reaction was when I was diagnosed at age 4.5 years old. I know she suffered from false guilt for many years. When I was 15 my 5 yr old sister became a T1. My father broke the news to me at breakfast. He said that my Mom had been up crying throughout the night. She had recognized all the signs of T1 come to a head in my youngest sister. Prior to that I had never really thought about T1 in that light.

My parents, primarily Mom, did a good job of raising a healthy child to adulthood. Lee Ellen, I see genuine heart & hope in your post. Pursue the pump as you are able but with or without the pump I believe that you help manage your son’s T1. All the management tools my Mom used with me are now medical collectibles at least in most parts of the US.

Keep pursuing funding for a pump but as Dennis wrote in his reply the vial(s) of insulin with syringes or pen can be an effective means of T1 care. Please stay positive bc you can still be a terrific Mom in raising a son with T1.

Best wishes.

I have to say, when I was on insurance from my husband’s employer, we signed up for the most expensive option the year I was going to get a pump, since the copay would be lower and save us money. But the following year, we chose the cheaper option. I wonder whether you have alternatives in your husband’s insurance?

Try this. It has I come requirements but it’s a higher cut off than most especially if you have a few kids.

https://www.uhccf.org/apply-for-a-grant/is-my-child-eligible/

Hi Lee, @Jfostersmom
I have switched from the Medtronic 670G Insulin Pump back to injections due to other health issues. If you are needing a pump and some supplies for your son I would love to donate to you. Please feel free to reach out to me. The cost of supplies to use the pumps is awful and I don;t want the supplies to go to waste. I believe in paying forward.
Let me know.
Shari Fox

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Thank you so much that so kind of you. They are starting him on the omnipod next week. We are going to see what happens.

That is great news. I wish him well and will continue to pray for him. Take care.

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Great news, @Jfostersmom!

The cost of cgm supplies is in my opinion ridiculous, I dont use mine all the time, maybe once a month or so just monitor how things are going, doesn’t help much with the upfront cost but does make them last quite a bit longer.

Abbott does offer a coupon/discount to use to reduce cost of Freestyle Libre system-call Abbott Diabetes Care at 1 855 632 8658. It brought my cost for sensors down to $75/month. Not cheap -but better than the full retail cost of approximately $130/month (for 2 sensors) and well worth the cost in my opinion. Good luck !

@Jfostersmom . Lee Ellen, can you share how things are progressing for your son?

Support is still here.

Hi there. Would you still be struggling to get supplies, and would The Dexcom G6 supplies help you out at all? If so I have some I can send to you. Please let me know.