Tuesday, May 15, 2007
CGMs... what's that all about?
CGM. Artificial Pancreas. Continuous Glucose Sensors. APP. What is all this!?
In March 2006, I travelled to Washington D.C. for JDRF's Government Day. 150+ advocates for JDRF from every state come to Washington D.C. to meet with their legislators. One of the big items we learned and talked about were continuous glucose sensors.
For those of you who don't understand what it's like to live with diabetes... most people with diabetes take insulin injections either via a syringe or an insulin pump, and they must prick their finger tips 4-6 times per day (sometimes more) to find out the amount of glucose in their blood. Too little glucose, can mean seizures and death (fairly quickly). Too much glucose can mean seizures, coma and eventually death (a fairly slow and painful way to go, I imagine). You can understand the importance of knowing your number!? Right?
So, back to March 2006... I was one of the ones at JDRF Government Day to learn about the new devices that were not approved for use in humans by the FDA. We learned about studies done on highly regimented people with diabetes who did on average 9 finger pokes a day and were put on a blind CGM (where they could not see the devices/readings). It was found those individuals were only in "good" range 30% of the day. We learned that there were two CGMs out of clinical trials and were just awaiting FDA approval. These devices put a small electrode under the skin and takes readings of glucose in the blood continuously. They average those every five minutes and report the number on a small pager like device. With these systems, you get 280+ glucose readings per 24 hour period. (Remember, the normal person at the time was doing 4 checks per day).
Our goal at Government Day 2006 was to talk to our Congressional Members (both Senators and Representatives) and ask them to sign a letter to the Secretary of Health and Human Services Mike Leavitt asking that the new technologies receive attention at the highest levels of HHS. The JDRF grassroots volunteers visiting the offices and on email/phone activations in the next two weeks throughout the country were able to secure 238 House members signatures and 63 Senate members signatures on the letters.
Within weeks, two of the three devices had FDA approval. In June 2006, on the first day we could, Steve and I ordered Ellie a continuous glucose sensor. The devices are expensive and are not currently covered by insurance. It cost $1000 to buy the system (an upgrade insulin pump for Ellie, and the transmitter) upfront, and the sensors that need to be replaced every 3 days cost $35 each. The transmitter has a life expectancy of one year. Our hope was that Ellie and I could share the device and perhaps not wear it for a week in between. That was our hope.
The new Minimed Real-Time sensor arrived at the end of September. Ellie was one of (if not) the first children in Michigan to be put on a continuous glucose sensor. I wore the device for our Ride to Cure Diabetes in October in Death Valley, CA and had NO low blood glucose readings. Ellie started on the device on November 1st. She has seen INCREDIBLE improvements in her average glucose readings, and has had almost no low blood glucose levels. With Ellie's improvements, and money padded into our flexible medical spending account, we purchased a CGM for me as well this year. I got mine in March. Again, no insurance coverage, but the numbers we are getting and able to make adjustments with are incredible. We both wear the devices constantly, with little time off. The numbers are addicting.
So, now, we are on the cutting edge of what is available to help keep us healthy until the cure if found. We have alarms set if our blood glucose levels fall below our "low" threshold or go above our "high" threshold. Some of you remember when I had a low blood glucose level and totalled my car 10+ years ago... that never would have happened with an alarm I was going low. We are getting 288 readings a day with access to instant graphs and trends instead of 4 (ok, so I rarely ever did four myself... one maybe two). If we can minimize the number high and low blood glucose levels, we can continue living complication free longer. JDRF was a part of advocating for money these devices developed in NIH labs in the 90s, getting them to market and clinical trials in the early 2000s, pushed for FDA approval in 2006 and now, in 2007, JDRF is helping to drive the devices into the hands of those who need them. The current drive is to help get these devices covered by the Centers for Medicare & Medicaid Services (CMS).
I'm telling you. It's incredible and I'm proud to be a part of it. To go back to those same Congressional offices in March 2007, just 12 months later, and show them my continuous glucose monitor was a great eye opener for them. To say, remember that letter I asked you to sign last year? Here is what it did. I sincerely believe it is what makes JDRF such a powerful organization. They get things done! One of the main focuses for JDRF now is the Artificial Pancreas Project (APP). Take a look at this website http://www.jdrf.org/index.cfm?page_id=104576 (I'm part of this project team) for more details on what the artificial pancreas is and why we need them.
So, maybe my next blog will be about trying to get insurance coverage for our CGMs. That will take up multiple pages, I'm sure.
How can you help? Glad you asked. Sign up to be an advocate: http://www.capitolconnect.com/jdrf/datamod/jdrfReg.aspx
In March 2006, I travelled to Washington D.C. for JDRF's Government Day. 150+ advocates for JDRF from every state come to Washington D.C. to meet with their legislators. One of the big items we learned and talked about were continuous glucose sensors.
For those of you who don't understand what it's like to live with diabetes... most people with diabetes take insulin injections either via a syringe or an insulin pump, and they must prick their finger tips 4-6 times per day (sometimes more) to find out the amount of glucose in their blood. Too little glucose, can mean seizures and death (fairly quickly). Too much glucose can mean seizures, coma and eventually death (a fairly slow and painful way to go, I imagine). You can understand the importance of knowing your number!? Right?
So, back to March 2006... I was one of the ones at JDRF Government Day to learn about the new devices that were not approved for use in humans by the FDA. We learned about studies done on highly regimented people with diabetes who did on average 9 finger pokes a day and were put on a blind CGM (where they could not see the devices/readings). It was found those individuals were only in "good" range 30% of the day. We learned that there were two CGMs out of clinical trials and were just awaiting FDA approval. These devices put a small electrode under the skin and takes readings of glucose in the blood continuously. They average those every five minutes and report the number on a small pager like device. With these systems, you get 280+ glucose readings per 24 hour period. (Remember, the normal person at the time was doing 4 checks per day).
Our goal at Government Day 2006 was to talk to our Congressional Members (both Senators and Representatives) and ask them to sign a letter to the Secretary of Health and Human Services Mike Leavitt asking that the new technologies receive attention at the highest levels of HHS. The JDRF grassroots volunteers visiting the offices and on email/phone activations in the next two weeks throughout the country were able to secure 238 House members signatures and 63 Senate members signatures on the letters.
Within weeks, two of the three devices had FDA approval. In June 2006, on the first day we could, Steve and I ordered Ellie a continuous glucose sensor. The devices are expensive and are not currently covered by insurance. It cost $1000 to buy the system (an upgrade insulin pump for Ellie, and the transmitter) upfront, and the sensors that need to be replaced every 3 days cost $35 each. The transmitter has a life expectancy of one year. Our hope was that Ellie and I could share the device and perhaps not wear it for a week in between. That was our hope.
The new Minimed Real-Time sensor arrived at the end of September. Ellie was one of (if not) the first children in Michigan to be put on a continuous glucose sensor. I wore the device for our Ride to Cure Diabetes in October in Death Valley, CA and had NO low blood glucose readings. Ellie started on the device on November 1st. She has seen INCREDIBLE improvements in her average glucose readings, and has had almost no low blood glucose levels. With Ellie's improvements, and money padded into our flexible medical spending account, we purchased a CGM for me as well this year. I got mine in March. Again, no insurance coverage, but the numbers we are getting and able to make adjustments with are incredible. We both wear the devices constantly, with little time off. The numbers are addicting.So, now, we are on the cutting edge of what is available to help keep us healthy until the cure if found. We have alarms set if our blood glucose levels fall below our "low" threshold or go above our "high" threshold. Some of you remember when I had a low blood glucose level and totalled my car 10+ years ago... that never would have happened with an alarm I was going low. We are getting 288 readings a day with access to instant graphs and trends instead of 4 (ok, so I rarely ever did four myself... one maybe two). If we can minimize the number high and low blood glucose levels, we can continue living complication free longer. JDRF was a part of advocating for money these devices developed in NIH labs in the 90s, getting them to market and clinical trials in the early 2000s, pushed for FDA approval in 2006 and now, in 2007, JDRF is helping to drive the devices into the hands of those who need them. The current drive is to help get these devices covered by the Centers for Medicare & Medicaid Services (CMS).
I'm telling you. It's incredible and I'm proud to be a part of it. To go back to those same Congressional offices in March 2007, just 12 months later, and show them my continuous glucose monitor was a great eye opener for them. To say, remember that letter I asked you to sign last year? Here is what it did. I sincerely believe it is what makes JDRF such a powerful organization. They get things done! One of the main focuses for JDRF now is the Artificial Pancreas Project (APP). Take a look at this website http://www.jdrf.org/index.cfm?page_id=104576 (I'm part of this project team) for more details on what the artificial pancreas is and why we need them.
So, maybe my next blog will be about trying to get insurance coverage for our CGMs. That will take up multiple pages, I'm sure.
How can you help? Glad you asked. Sign up to be an advocate: http://www.capitolconnect.com/jdrf/datamod/jdrfReg.aspx
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