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

@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.

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.

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.