I need everyones help here - please read

I am composing a letter to my government compelling them to really consider covering all expenses for those with Type 1 Diabetes. Specifically all technologies related to the insulin pumps - CGMs are not covered.

What I am asking for is a personal story from your experience as to why or how the pump has changed your diabetes management or how it could have prevented a certain experience. I will attach these stories to my letter.

My story is below:

Back when I was around 10 years old I woke up in the middle of the night and tried to get out of bed. I could not move and didn’t understand what was going on. I called out for my Mom and she came in to my bedroom. It turns out my blood glucose level had dropped so low that I became unable to move my own body. Her and my Dad gave me sugar to bring that level up and then drove me to the hospital. Had I not woken up, no one would have known and I would have slipped into a Diabetic coma.

Together we can make a change!
Thanks to all,
Suzanne

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@Suz777 hi Suzanne. That’s a scary story glad you were ok. I’m sorry but you want the government to cover CGM and pumps? Would that be under Medicare Medicaid? I am pretty sure US government does already cover it? Anyway all my diabetes stuff is covered with private insurance through my employer.

One issue might be regarding what technical hurdle would have to be established for coverage because Cart Blanche coverage would likely be abused by both tech companies as well as covered individuals in my opinion.

The pump and CGM didn’t save my life. It just made diabetes suck a little less for me. Maybe that’s just me sorry my story wasn’t better.

Anyway good luck

Suzanne @Suz777, I agree with you that technology can make living with diabetes more convenient, but I’m not sure that giving everybody with diabetes the latest tech will help. I do agree with you that a passive glucose monitor for most people would help us avoid some severe hypoglycemic events - as long as the user pays attention.

A pump, for instance is not a plug-n-play lifesaver - in fact, by reading all posts on this forum, I can see that many PWD who have been ‘given’ a pump begin using it without reading the User Guide and get themselves into critical situations. What I would rather see is “the government” assuring that all persons living with autoimmune / TypeOne diabetes have access to insulin.

Yes, I use a pump, but I can not say that it has prolonged my life or ever saved my life.

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Dear Official, it’s not going into high levels of glucose that worry us T1Ds, it’s going low and needing to wake up to make a treatment decision. My CGM Dexcom G6 has an alarm to alert low and high glucose. While sleeping the alarm has saved my life many times, particularly when I was single and alone. Also, The CGM is an excellent tool to manage levels to a healthy range to try and avoid diabetic complications. Every Diabetic particularly T1 or people who struggle with dangerous lows need this tool. Thank you for taking this issue seriously. Mary Fuerbringer

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Suzanne, Medicare is covering DEXCOM Cgms. mine just went through, I lost my coverage about 6 yrs. ago, but I got it back. Re: pumps Medicare is covering all the pumps but my Omni Pod, Mr. Azar decided that the Omni Pod should be a drug because it is tubeless and wireless Wrote to the President, that was a mistake, wrote to my congressman, big joke, just wrote to Kirsten Sinema got a response from Martha McSally and she didn’t understand that the Omni Pod needs to be put back as a DME in spite of the fact that the Omni Pod is a machine. Discussed this problem with 2 of Insulet’s vice Pres. that was useless. I will help you in anyway I can, I need to educate McSalley again regarding DME. Our congressman had the nerve to send me the definition of a DME as if I didn’t have a clue. Some of the Feds are worthless( forgive my opinion ) but I have been working on this for a while. Switched to CIgna because they have a great Diabetic plan and they don’t argue of question, would you believe Insulin is $9.00 a bottle, supposedly my Dexcom CGM for l month of transmitters and PDM is only 102.00 to start after that it is approx. $50 a month… Let me know if I can help. ps. Tried to file a complaint against Mr. Alex Azar, but the complaint would go to his office. As far as I can find out changing the category of my Omni Pod is the only change he’s made since he was appointed. PPS: I own stock in Insulet, tried to influence Insulet by being a stock holder didn’t work, Omni pods are less expensive in Europe and Canada, even though Insulet is an American company. Got any suggestions, I’ll listen. Bye Jan

Thanks Joe! I live in Canada and they just started covering the pump. CGM still not covered. Your comment made me giggle and is so true. The pump didn’t save your life just made diabetes suck a little less. I understand that and I’m giggling with you. We are in this together :slight_smile:

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This is why it is important to have a CGM when on the pump. The pump on its own is just another way of administering insulin. The pump along with the CGM is what makes it life changing. Of course the user has to want to use it properly. I can’t change the attitudes of people with diabetes who don’t take care of themselves but having the ability to set a window of where you want your BG levels to be at and being alerted when you are outside of that target will in fact reduce diabetes related complications in future. Also, for me, I work with children and when my BG drops quickly and I don’t feel it right away. I am out of commission for a good 10-15 minutes. That is a horrible feeling and can be quite scary. The CGM will alert me that I am on my way down and I can treat the low before it gets to that point. The pump and the CGM, in my opinion, go hand in hand. They should both be covered.

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No, this is absolutely false. You do not need a CGM to have a pump be life-changing. A pump without a CGM is not just another insulin delivery device. Comments like these do a serious disservice to the diabetic community.

The CGM has brought about a lot of good things to diabetes management, but they have also done a great injustice. You don’t need to look any further than what happened during the Dexcom outage a few months ago. It was shocking to see grown adults freaking out because little Johnnie’s BG couldn’t be seen on an app for a few days and they acted like the world was coming to an end. What is the most worrisome is the fact that most new diabetics can’t control their diabetes without a CGM. They’ve never been taught to check their BG with a meter, recognize the signs of when their BG is low/high. All this is the unintended consequences of CGM, which has replaced being vigilant with woefully inept diabetes management.

Do we not have Diabetes educators anymore? I don’t understand. I think I am being misunderstood here. When I was diagnosed I had to pee in a cup to find out what my sugar levels were at. I see how far we have come. I still carry a testing machine and syringes.
I’ve seen all sides here. The pump and the CGM working together is where technology has brought us and together they can be life changing. That does not mean that people with diabetes should solely rely on them. There are times when we need a back up plan.
We need to know what to do in emergency situations. We need to listen to our bodies. We need to educate ourselves. Our endocrinologists need to give us the information we need. Just like any ailment or health issue, we need to be in control and we need to
get informed. That, we must decide for ourselves. We need to do our own research and seek help from professionals. That does not mean that a new technology that is designed to help diabetes be more manageable to assist in fine tuning our diabetes health should
not be used and it certainly does not mean that it should not be covered by medical. I take very good care of myself, i am very healthy, I listen to my body, I do my research, I go see an endocrinologist on a regular basis and get my eyes checked and get my
A1c done every 3 months but I have never been in better control since using the pump along with the CGM. It is convenient and precise for me. Does that mean I would be in trouble if that all crapped out on me? No. I would prick my finger and check my BG with
my meter and I would measure out and inject insulin with a syringe. And everything would be just fine. But…I would be even more grateful for the new technologies once they were up and working again because they simply make my day to day life easier. And
as any person with Diabetes would know, life just ain’t that easy when you’re living with Diabetes. So get out! Get educated! And then get a pump and a CGM! The educated person living with Diabetes needn’t worry about their pump not working in any situation
because they will know just what to do and they will have all the supplies they need to do it. I can’t help those who are ignorant…or lazy…or whatever it is that contributes to the fact that they don’t know how to manage their diabetes in an emergency
situation or otherwise.

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Hi @Suz777 and thank you for your efforts. Sharing experiences from individuals is a nice idea. If I might say, when I got my first CGM many years ago my doctor told me I was a good candidate because I was developing hypoglycemic unawareness. Thankfully my body was able to tolerate the lows without any accidents or loss of consciousness, but the device would keep me safer, and has. I don’t know how the process works now - if the doctor most still show demonstrated medical necessity (based on numbers and experiences) to preauthorize them - as was the case with me; or if their impact is understood - by some insurances at least - and the doctor simply needs to recommend them. So you might solicit input from your doctor asking for input about how these devices have helped their patients. They can’t violate HIPAA by giving you names and specifics, but may be able to share summaries or “I had a patient who…” that you could pass on, assuming that’s not a violation.
I wish you the best - it’s going to be a tough fight. I think the advantages and benefits of our devices are well known now - it’s a question of being willing to spend the money up front to prevent major issues and expenses down the road. For instance: one forum member was frustrated if not actually outraged that his insurance would only allow him ## test strips per month when he needed more to track his control. Strips are a small expense when compared to the costs of an ER visit due to hypoglycemia, or a hospital stay due to DKA, or the cost of treating complications - and yet… As far as money goes, insurances and probably government seem more concerned with saving money in the short term than health and lives in the long. Still, there is power in numbers, and hopefully your work in combination with that of others will help make change. Wishing you the best.

Thank you so much Dorie, for your story and for your support and for your advice.

Dev. I don’t know if this will affect you, but Omni Pods are considered a Drug and not DME ,after he did this the price sky rocketed Mr. Azar changed the classification, but I don’t think all ins. co agree with this move. You may wan to check with your ins. co for their classification. Hopefully once you reach your limit your cost will drop. My CGM saved my life a number of times, Thank goodness for the alarms, went to a CGM because 1 night my husband tried to wake me up and couldn’t, he forced a coke down me, I finally came around. Cigna is my Ins, co. and they are covering my Pump, CGM, and supplies, you might want to call them. Hope this helps, Bye Jan

Hi, I’m a new member to the page, but I’ve been T1D since my 6th Birthday. I am now 26 years old and have realized how important it is to PROPERLY manage my diabetes, and the true effects it takes on not only me, but my loved ones as well. I have been to extreme highs to where I’m puking and in the hospital for days, (sadly I even got to the point to if I got like that I “knew what to do” -cold rag, bottle of water, insulin and ‘kit’, and grab a blanket or towel and lay in the bathroom floor by the toilet!)
Me thinking I knew it all is what put my kidneys in the downfall they are in.
The lowest of lows, I’ve had 5 in these past 20 years…and 3 of them were in the past year and a half. Luckily I had the 14 day Libré Sensor, and my boyfriend was able to realize why I wasn’t waking up and act quickly!
I truly loved my libre, I miss it. But since I’ve lost my insurance coverage and am having extreme trouble finding an affordable plan…I realize how crucial that sensor was to PROPERLY MANAGING my Type 1 Diabetes!

When I was a youngster my dr put me on the pump and personally, I like taking shots (pens) better. They don’t kink or rip out, when you take it you KNOW it’s there.

With all this being said…
My questions are:

1.) What type of CGM has the alarm?
My lows have been found when waking up (or NOT waking up) in the mornings.

2.) I don’t just need insulin and diabetic supplies, I need dental and vision care as well as health insurance. Is there anyone who knows how a T1D that has no insurance coverage can find AFFORDABLE and GOOD health insurance?

I luckily have a friend that takes the same insulin as me, and if it weren’t for him I’d be drowning in diabetic debt, or 6 feet under.

PLEASE!!! Any information on coverage is important for me!!

Thanks.

There is no diabetic that’s exactly the same as another. Each of us have to manage our own ways with our doctors advice.

I have been diabetic for 20 years, I was taught at 6 years old to give my own shots and check my glucose.

The fact of the matter was, I didn’t want to prick my finger 4 times a day and get those painful, ugly black holes in the tips of my fingers.
So one day I just stopped. Yes, that’s correct, I would go MONTHS without checking my blood sugars and lie to my parents and doctors claiming I lost my log sheets.
This was POOR management on my part and I assure you, I’m paying for it now.
Starting kindergarten as a diabetic was frightening enough than to have other children point and say “don’t touch her, you’ll die! She’s diabetic!”
Even on to my teenage years “I knew” when to realize when my blood sugar was high or low.
Up until my highs wouldn’t register and when I felt low my blood sugar was over 100.

Pumps were just not for me, I was a Tom Boyd, it ripped out, and I couldn’t hide the wire everyone wanted to pull on! So shots were my thing.

Now when it comes to CGM systems, THEY CHANGED MY LIFE!!! They completely improved diabetes management!

I like the idea of the apps, and the alarms…
but the 14 day Librë works just fine as far is “I need to check my blood sugar” it has its own hand held device or I can check it on my phone by waving my phone past it.

I’ve had 3 lows in the past year, lowest being 10! My boyfriend thought I was just “to tired and exhausted to wake up” and then for some reason he grabbed my libre device and checked it and was able to act quickly and accordingly.

So as far as little Johnnie, I hope he learns the difference and has a back up “old fashion” glucose kit for when he’s feeling bad.
But I’m a firm believe that a CGM is the best way to manage and prolong a busy, forgetful, DIABETICS LIFE!!

PS: by prolong I simply mean my Kidneys, my retinas, and my neuropathy are remaining at the damage they have been for the past year and a half with my sensors than the devastating decline to dialysis, blind, or becoming an amputee! :raised_hands:t2:

Hi @mak94. I use Dexcom’s CGM, which has alerts I can set to let me know if I’m low or high, or dropping or falling. Medtronic makes one as well, although I don’t know if it must be used in conjunction with their insulin pump or works as a stand-alone. Dexcom works with my Tandem pump as the receiver (and I use the Control IQ feature to adjust basal insulin as needed) but it has a handheld receiver as well. It also allows you to share your readings with someone so they can assist you as needed.
Freestlye has a model that comes with alerts (Freestyle 2) but I don’t have details about it.

Depending on your work situation you could look into your state’s Medicaid program. I’m on it right now and my supplies are covered. You also said PS: by prolong I simply mean my Kidneys, my retinas, and my neuropathy are remaining at the damage they have been for the past year and a half with my sensors than the devastating decline to dialysis, blind, or becoming an amputee! :raised_hands:t2. I hate to suggest it especially since you are so young, but since you have some damage, have you looked into disability benefits?

Hello, Is anyone covered by Military health insurance (Tricare, with Humana as administrator) ? My fiancée is a veteran and I could be covered as spouse after marriage, but am wondering how good or poor coverage is for insulin, syringes, and a CGM. I don’t get clear answers when I call them, so thought another T1D might be more knowledgeable. Thanks !