Listen up, insurance providers: People with diabetes want the freedom to at least test out new continuous glucose monitoring technology to improve their lives with diabetes. And many of them (many, many of them) are not taking no for an answer.
Along with the JDRF, Gina Capone
, Founder of the Diabetes Talkfest chat site, has led a grassroots “CGM Anti-Denial Campaign” that’s quickly reaching critical mass proportions. Last month, Gina, who’s been denied coverage for a CGM system by her provider multiple times, put together an online petition with the goal of gathering 2,000 signatures by World Diabetes Day, Nov. 14. Last week — two and a half months early — she surpassed that number. She’s now aiming for 5,000 signatures. Not too shabby.
Some fuel for the fire: the JDRF just released results of the first clinical study showing evidence that continuous glucose monitoring devices do indeed lead to “significant improvements in blood sugar control.” The adults in the study “were more likely to lower their HbA1c by at least 10% and achieve HbA1c levels below 7% compared with the control group.” And those who used the CGM device at least six days a week “had substantially lower HbA1c levels after six months compared with patients who used CGM less than six days a week.”
I personally had to abort my review of CGM systems lately due to skin problems. Bum luck for me! But I understand how vital this technology can be to offset the complete frustration of feeling that your body is out of control with hypoglycemic unawareness. Not to mention that it’s damn dangerous.
Anyway, I had a chance to chat with Gina yesterday about how she started with the CGM coverage campaign, her goals going forward, and what it all means to her personally:
Gina, what motivated you to take on such a big issue and start this campaign? 
I started this because I kept getting denied. And all these other people, too. I got sick of hearing all the sad stories; a lot of parents are trying to get CGM for kids that have hypoglycemic unawareness. They go really low in the middle of the night.
Why is it so important for you personally to get insurance coverage for a CGM system?
{Gina sighs} I just got denied again today {Tuesday} by Aetna. It’ll be my eighth year with diabetes in November. My last A1c was 8.3, and I’ve been struggling with highs and lows. I work out at a gym and that’s so hard to manage. It’s not like I don’t take care of myself. I try everything, it’s just not working. I also have a full-time job in design {for a travel magazine} and I spend nights working on the online diabetes stuff, so 
you know how it is: your life is busy and it’s hard. It’s been a really difficult battle for me.
The only time it seems to work is when I’m wearing a CGM and can make adjustments based on the data. (I got to test a CGM system for two separate weeks.)
With the CGM, we figured out that my worst time was at night, from 9pm-2am, and I was having another problem with the dawn phenomenon, peaking in the mornings. The last time I used the CGM my 14-day average was down to 142, whereas before my typical average was above 180.
You also just got married in April, right?
Yes. Another reason why I want a CGM is because I want to have a child and I just can’t get my A1c down. I just feel like I’m always fighting it…
I know that CGM is not for everybody, just like the pump is not for everybody. But we should have a choice. At least we should be able to try it and see if it makes a big difference in our blood sugar control. If it works, great. If not, maybe we could return the systems and refund some of the insurance funds for sensors and supplies.
Almost 2,100 people have already signed the petition. Where will you submit it to get results? And what’s next?
My partner John and I at the Talkfest are working with the JDRF to get contacts of the medical directors at all the major insurance companies, and we’ll submit the petitions to them. We hope to have all that in place by Nov. 14. As you know, I’ve created a community website to make the updates and information accessible to all. You can sign up there for email updates.
Our next goal is to help people get insurance coverage who currently can’t. That’s a tougher thing to do, I know. But I’m passionate about this. I’m not going to stop until everybody gets coverage.
Wow, Gina, you definitely count as one of my diabetes heros. Let us know what else we can all do to help!
I love hearing the updates about all the efforts going on around these issues. Thanks for this interview with Gina. More inspiration!
It’s ridiculous that we have to fight for this. Insurance companies need to cease being for-profit, otherwise this nonsense will never stop.
I finished a medical genetics section this week, and I have to say that more than ever I think type 1s should adopt if they want to be parents. I actually think everyone should adopt, because the planet is crowded enough, but type 1 is not something to gamble with.
Hold on Lauren-I’m a type 1 and I have a 30 year old daughter who is perfectly normal-no autoimmune diseases of any kind. She was conceived 10 years after I was diagnosed.
I also believe that the type 1 gene is recessive, so both parents need the gene for diabetes to result.
I’m sure your comment makes Gina feel real good.
I just can’t believe how insurance companies convince you of all those benefits that you can enjoy but once that you have to face your reality there is something wrong with your diabetic condition or around it.
It’s insanity that we have to fight so hard to get the insurance companies to cover technology that will help bring down A1C numbers!!
It blows my mind that the insurance companies would rather pay for our complications down the road instead of paying for the preventative measures.
I’m currently fighting for coverage…I’m working on my second appeal and on the 23rd I’ll be at their offices in center city Philadelphia explaining, defending, my decision to use CGM and demanding coverage.
I have had the C GM by DexCom and love it. I had to pay for it & full price for sen sors and the price wen t from $240. to $275. My insurance is of no help. I am unemployedd.
I have a Dex Com CGM and my insurance pays nothing
HI, I have been diabetic all my life, it is called a birth defect because I was a premi. They told my mom I would not live to be 40, well I am 56 but I do have a lot of trouble with autoimmune disease, it is call Automonic dysfunction which includes 18 different diseases under that name. People the good news is how far we have come since the 50′s when diabetes was a death sentence!! Don’t expect your physcian or insurance company do everything for you, you have to continuesly work at doing things for your self. Make sure you keep your physcian informed at every visit even if you are repeating yourself from visit to visit make them hear you. Don’t count on your insurance company to “volunteer” anything make your self informed of every little thing about your diabetes and what they have to do and keep at them….this is not easy but it’s your life!!!!!
I am getting an OmiPod next month with u500 insulin in it. That U500 as apposed to U100 is scary but I am willing to work with it to save my life. I have become insulin resistant which means my body is rejecting the insulin I put into it, but if it keeps me alive and up and going I will use the U500. Stay up and don’t have any pity parties for yourself because you are all you have to depend on with this disease and it is NOT a death sentence.
So, now go out there and live don’t lay down and die, it’s up to you.
Anne