Hi everyone! My 14-month-old was diagnosed with type 1 last month and we are struggling to pay the $380/ month for the Dexcom sensors. We are also considering getting him the Omnipod so we don’t have to give him shots and his BS always runs high so we are hoping the continuous delivery of insulin would be a big help with that and keeping ketones away. The Omnipod is $800 every 3 months. We have insurance and I thought it was “the best” but it doesn’t cover either one or the equipment they require. We would not qualify for medicare. Does anyone have any advice? Thanks in advance!!
I understand there are programs that can help with insulin and pump supplies although I don’t know details - some more informed members of the forum will be able to fill you in.
Although certain supplies and meds are not the preferred ones for a particular plan, they may cover it with special authorization from your physician. As I write this I am waiting for my doctor to send one for the insulin I use in my pump - I find they are quite adept at handling the process and know how to document the need for a particular item.
As you are checking out options contact your plan to see if additional information is needed to reconsider coverage. If so the information will need to come from your doctor so let them handle it from there.
There are other pumps available although they are not tubeless; if they do cover those there is feedback from parents on the forum that you might find helpful in addition to research on the various websites.
I keep a Freestyle Libre on hand in case I have issues with my Dexcom or there is a delay in getting my supplies. It is much more affordable than Dexcom although you do have to swipe the sensor periodically to get readings and it lacks some of the bells and whistles. Still it definitely beats multiple fingersticks every day.
Having said all that, don’t be too quick to switch to a pump. As understandably concerned as you are about highs it will take a bit of time to find the insulin regimen that works best for him (and that will change add he grows). If you’re not already doing so I recommend working closely with your doctor, keeping detailed logs of what he ate and when along with his readings, to help fine tune his insulin. I was diagnosed at age 3 and got used to the shots after a while (they were the only option at the time). The needles used were a much larger gauge and more painful. I’m not suggesting your little guy won’t feel anything, but the needles are much finer now and there are methods to prepare the site to help minimize pain.
Wishing you the best - let us know what you find.
@jwickline Hello Jennifer, and Welcome to the JDRF TypeOneNation Forum!
You are not alone struggling with the high out-of-pocket cost of living with diabetes, and I know how hard it is on a parent/grandparent when trying to provide the very best possible for a child. There is some help available from different sources - for a starter, logo on to Help with Your Diabetes Prescription and Insulin Costs - JDRF . On the main JDRF.org webpage, under “Resources” [also click at the top of this page] there are some very comprehensive learning pages for Newly Diagnosed.
Also, Insulet / OmniPod has an entire section dedicated to children and childcare for diabetes. Several resources there.
hi @jwickline welcome to TypeOneNation. only to add to what has already been said. Insurance companies often deny coverage for medically necessary supplies as a matter of business. If you “go away” then they “win”. In my opinion, consider getting a letter of necessity from an endocrinologist and begin an appeals process. Don’t be scared to threaten and use the word “lawyer” if a second appeal is necessary. This, unfortunately, is the way things are, from now on. Good luck!
Joe is right (as always): sadly, having to fight through multiple rounds of denials is standard. Try to hang in there and work your way through the system. We got denied repeatedly, but in the end, they DID cover what our daughter needed. It’s so wrong, but that’s how it is.
Oh, and we told our Congressman. Figured it can’t hurt.
Abbott diabetes has a cgm called Libre 14 day, not all the warnings like Dexcom but i only pay 70 dollars a month without insurance for two sensors. You don’t need a reader if your phone has NFC, you can use the app.
Thank you for your advice! I have looked into the freestyle libre, but he is too young for it unfortunately. The age is 4+. I was very disappointed to discover this because I would much rather pay that price
I have occasionally purchased diabetes supplies from Amazon or eBay. Technically people are not supposed to sell or buy such items there (due to rx requirements I believe), and a transaction may be halted if the buyer or seller is flagged - that happened to me once when I tried to sell some things I no longer needed. However you could get lucky. I always check the expiration date and make sure the packaging is intact as a bit of a safety measure. Not the ideal route to go but…
And if you have to do sticks to test blood sugar, a number of the lancet devices have adjustable depth settings. I don’t know that the minimum would be completely painless but it may be better than the single setting devices.
Definitely get the insurance figured out. You are being introduced to the other side of medical coverage: Durable Medical Equipment (DME). Not very “durable” is it? If you are using a high-deductible plan, then maybe you have to pay for this stuff at full price until you hit your cap. If its “regular”? insurance plan, then its very very likely dexcom and omnipod are covered. You just need to find the right words and the right person to talk to.
So, you’ll have to look into getting Dexcom covered via DME and Pharmacy benefits to see which is best. Being under 2 years, coverage may require appeals.
Dexcom has the Dash pods that care covered via Pharmacy. They also have older pods called “The Omnipod System” or “eros” pods that are often DME. We use these since it allows us to use a community-built app called Loop.
As far as financial assistance, check out https://www.uhccf.org/ and see if you qualify. This is intended to cover co-pays and other expenses your insurance does not.
I don’t know if other carriers have a program, but I know Kaiser has their own Medical Financial Assistance (MFA) program. If you qualify, it covers all your copays (except for DME). You have to apply every 6 months.
I’m a brainstorner and sometimes my ideas can be way off the mark - if that’s the case here please correct and forgive me. But - while I understand enrollment has closed for the Healthcare exchange (ACA) plans - if you have coverage via an employer you might see if you can change your plan selection to one that better meets your needs, even if their selection deadline has passed. It’s at least worth taking a shot (no pun intended) at taking with HR to see if they could make a discrete exception.