Comments on: The JDRF “Changing with the Times”: A Talk with Aaron Kowalski http://www.diabetesmine.com/2008/01/the-jdrf-changi.html A gold mine of straight talk and encouragement for people living with diabetes Thu, 18 Mar 2010 02:09:44 +0000 http://wordpress.org/?v=2.9.1 hourly 1 By: Harold http://www.diabetesmine.com/2008/01/the-jdrf-changi.html/comment-page-1#comment-41125 Harold Mon, 26 May 2008 03:11:30 +0000 http://diabetesmine.dreamhosters.com/2008/01/03/the-jdrf-changing-with-the-times-a-talk-with-aaron-kowalski/#comment-41125 I am a type 1 diabetic with serious hypoglcemic unawareness.I am currently enroled in a study to evaluate the effectiveness of the continuous glucose monitor in preventing hypoglcemia.Have found the device to be helpful as it has detected numerous hypos but somewhat unreliable .At times CGM results track glucose monitor tests quite closely with a lag at other times there is no corelation resulting in missed lows error messages and false readings. Hal I am a type 1 diabetic with serious hypoglcemic unawareness.I am currently enroled in a study to evaluate the effectiveness of the continuous glucose monitor in preventing hypoglcemia.Have found the device to be helpful as it has detected numerous hypos but somewhat unreliable .At times CGM results track glucose monitor tests quite closely with a lag at other times there is no corelation resulting in missed lows error messages and false readings.

Hal

]]> By: rc http://www.diabetesmine.com/2008/01/the-jdrf-changi.html/comment-page-1#comment-39726 rc Tue, 25 Mar 2008 18:22:51 +0000 http://diabetesmine.dreamhosters.com/2008/01/03/the-jdrf-changing-with-the-times-a-talk-with-aaron-kowalski/#comment-39726 Do you all honestly believe that if a cure was found that it would be revealed. Think of the millions of dollars that are spent annually. These companies are truely interested in only one thing "making money" at my childs expense. Do you all honestly believe that if a cure was found that it would be revealed. Think of the millions of dollars that are spent annually. These companies are truely interested in only one thing “making money” at my childs expense.

]]> By: Dr. M. Natarajan, Diabetes Volunteer aka Lion Roger http://www.diabetesmine.com/2008/01/the-jdrf-changi.html/comment-page-1#comment-39725 Dr. M. Natarajan, Diabetes Volunteer aka Lion Roger Wed, 09 Jan 2008 15:28:18 +0000 http://diabetesmine.dreamhosters.com/2008/01/03/the-jdrf-changing-with-the-times-a-talk-with-aaron-kowalski/#comment-39725 The best known cure for diabetes is still prevention especially if it is in the family and a lot of personal education, which is not difficult in this technological age. A lot of common sense with a little discipline and a cheerful approach is what I suggest and this will go a long way and I am optimistic about a real cure soon. Thank you. The best known cure for diabetes is still prevention especially if it is in the family and a lot of personal education, which is not difficult in this technological age. A lot of common sense with a little discipline and a cheerful approach is what I suggest and this will go a long way and I am optimistic about a real cure soon. Thank you.

]]> By: BB http://www.diabetesmine.com/2008/01/the-jdrf-changi.html/comment-page-1#comment-39724 BB Sat, 05 Jan 2008 16:37:39 +0000 http://diabetesmine.dreamhosters.com/2008/01/03/the-jdrf-changing-with-the-times-a-talk-with-aaron-kowalski/#comment-39724 As someone newly diagnosed with Type 1, it's blindingly obviously that CGM would have a huge impact on the quality of my life. But I simply can't afford the thousands of dollars a year this critical treatment would cost without insurance reimbursement. It's heartening to see the JDRF acting as an advocate on the subject of insurance reimbursement. I'm sure there are great technologies coming over the next decade, but I'm discouraged at my inability to get my hands on the best technology on the market right now. Since we can't receive reimbrusement for a relatively simple CGM device and the accompanying sensors, imagine the fight for dollars for an artificial pancreas, which will be prohibitively expensive! As someone newly diagnosed with Type 1, it’s blindingly obviously that CGM would have a huge impact on the quality of my life. But I simply can’t afford the thousands of dollars a year this critical treatment would cost without insurance reimbursement. It’s heartening to see the JDRF acting as an advocate on the subject of insurance reimbursement. I’m sure there are great technologies coming over the next decade, but I’m discouraged at my inability to get my hands on the best technology on the market right now. Since we can’t receive reimbrusement for a relatively simple CGM device and the accompanying sensors, imagine the fight for dollars for an artificial pancreas, which will be prohibitively expensive!

]]> By: camille johnson http://www.diabetesmine.com/2008/01/the-jdrf-changi.html/comment-page-1#comment-39723 camille johnson Fri, 04 Jan 2008 16:36:03 +0000 http://diabetesmine.dreamhosters.com/2008/01/03/the-jdrf-changing-with-the-times-a-talk-with-aaron-kowalski/#comment-39723 PLEASE! I want to get in on a trial for CGMs. (I had a Dexcom7 for about 2 months but it was stollen from my son's hospital room while he was getting a new kidney. How's that for ironic?) My insurance company wouldn't pay for the CGM and I didn't think it was vary accurate but ... I'm willing to try anything. I'm a T1, for 26 years, 155 lbs, 5'5", 60 years old today). Prior to having the CGM, I went to the emergency room 28 times (unconcious) in 9 months -- even though I tested 6-10 times a day. I need a CMG, even if it isn't very accurage. PLEASE! I want to get in on a trial for CGMs. (I had a Dexcom7 for about 2 months but it was stollen from my son’s hospital room while he was getting a new kidney. How’s that for ironic?) My insurance company wouldn’t pay for the CGM and I didn’t think it was vary accurate but … I’m willing to try anything. I’m a T1, for 26 years, 155 lbs, 5′5″, 60 years old today). Prior to having the CGM, I went to the emergency room 28 times (unconcious) in 9 months — even though I tested 6-10 times a day. I need a CMG, even if it isn’t very accurage.

]]> By: whimsy2 http://www.diabetesmine.com/2008/01/the-jdrf-changi.html/comment-page-1#comment-39722 whimsy2 Fri, 04 Jan 2008 03:16:02 +0000 http://diabetesmine.dreamhosters.com/2008/01/03/the-jdrf-changing-with-the-times-a-talk-with-aaron-kowalski/#comment-39722 How can I sign up to be in one of their clinical trials? Any plans on doing any in the Pacific Northwest? How can I sign up to be in one of their clinical trials? Any plans on doing any in the Pacific Northwest?

]]> By: Melitta http://www.diabetesmine.com/2008/01/the-jdrf-changi.html/comment-page-1#comment-39721 Melitta Thu, 03 Jan 2008 21:09:40 +0000 http://diabetesmine.dreamhosters.com/2008/01/03/the-jdrf-changing-with-the-times-a-talk-with-aaron-kowalski/#comment-39721 I look forward to having the results of the JDRF CGM trial...I have Kaiser Permanente insurance, and Kaiser does not cover continuous glucose monitors. I want one!!! And thank you, Aaron, for your efforts and dedication. I look forward to having the results of the JDRF CGM trial…I have Kaiser Permanente insurance, and Kaiser does not cover continuous glucose monitors. I want one!!! And thank you, Aaron, for your efforts and dedication.

]]> By: Kevin http://www.diabetesmine.com/2008/01/the-jdrf-changi.html/comment-page-1#comment-39720 Kevin Thu, 03 Jan 2008 19:30:41 +0000 http://diabetesmine.dreamhosters.com/2008/01/03/the-jdrf-changing-with-the-times-a-talk-with-aaron-kowalski/#comment-39720 Sarah, It would be an understatement to say that you are not alone in your frustration with the state of the art in diabetes care, technologies and efforts toward finding a cure. I would like to introduce a not so well-known area of progress that has been made toward reducing highs, lows, reduced A1c's, improved quality of life, etc... that Aaron mentioned as a focus for JDRF. Amy also listed the GlucoMON in her end of year recap. While we continue to discuss opportunities to work with JDRF, Diabetech is a small company that is already applying diabetes technology advancements with cure therapies in our support of pancreatic islet cell transplant screening and post surgical blood sugar monitoring with our partners at Baylor's PICT program headed by Dr. Marlon Levy. I'd like to take this opportunity to request that the diabetes community weigh in here on DiabetesMine regarding our SweetKids initiative (or twists on it that you think of) and let some influential people know what you think about accelerating real advancements in the state of diabetes care...RightNow! and not years from now. <a target="_blank" href="http://sweetkidsnetwork.org" rel="nofollow">http://sweetkidsnetwork.org</a> Sarah,

It would be an understatement to say that you are not alone in your frustration with the state of the art in diabetes care, technologies and efforts toward finding a cure.

I would like to introduce a not so well-known area of progress that has been made toward reducing highs, lows, reduced A1c’s, improved quality of life, etc… that Aaron mentioned as a focus for JDRF. Amy also listed the GlucoMON in her end of year recap.

While we continue to discuss opportunities to work with JDRF, Diabetech is a small company that is already applying diabetes technology advancements with cure therapies in our support of pancreatic islet cell transplant screening and post surgical blood sugar monitoring with our partners at Baylor’s PICT program headed by Dr. Marlon Levy.

I’d like to take this opportunity to request that the diabetes community weigh in here on DiabetesMine regarding our SweetKids initiative (or twists on it that you think of) and let some influential people know what you think about accelerating real advancements in the state of diabetes care…RightNow! and not years from now.

http://sweetkidsnetwork.org

]]> By: Jeff http://www.diabetesmine.com/2008/01/the-jdrf-changi.html/comment-page-1#comment-39719 Jeff Thu, 03 Jan 2008 19:15:07 +0000 http://diabetesmine.dreamhosters.com/2008/01/03/the-jdrf-changing-with-the-times-a-talk-with-aaron-kowalski/#comment-39719 It is somewhat interesting that he noted "Our goal is to see a thriving market, in which multiple companies are developing outstanding technologies that help people with diabetes achieve better outcomes" yet the organization has done very little to address the fact that over the past decade, the number of insulin suppliers has fallen by 40%, and at present, there are just 3 FDA-approved suppliers who operate in the U.S. (by comparison, in 1981, there were 5). Generics do not yet exist, and legislation has stalled in Congress since 2005. Having the costly technology makes for great headlines, but having a competitive market, one which spurs product innovation and reduces costs for patients and their healthcare providers, should also be considered. After all free markets work most effectively when there is competition! It is somewhat interesting that he noted “Our goal is to see a thriving market, in which multiple companies are developing outstanding technologies that help people with diabetes achieve better outcomes” yet the organization has done very little to address the fact that over the past decade, the number of insulin suppliers has fallen by 40%, and at present, there are just 3 FDA-approved suppliers who operate in the U.S. (by comparison, in 1981, there were 5). Generics do not yet exist, and legislation has stalled in Congress since 2005.

Having the costly technology makes for great headlines, but having a competitive market, one which spurs product innovation and reduces costs for patients and their healthcare providers, should also be considered. After all free markets work most effectively when there is competition!

]]> By: Sarah http://www.diabetesmine.com/2008/01/the-jdrf-changi.html/comment-page-1#comment-39718 Sarah Thu, 03 Jan 2008 19:07:47 +0000 http://diabetesmine.dreamhosters.com/2008/01/03/the-jdrf-changing-with-the-times-a-talk-with-aaron-kowalski/#comment-39718 I won't believe it until I see it....yawn... Just HOW many times have us "long-timers" been told that a "cure is around the corner"? My insulin pump today is not worth the $7000 I paid for it. Yes, it has saved my life, but the technology is not that advanced, especially since we can build a space station, but we are yet to produce an insulin pump that won't break down (3 times in 1 year for me) or detect blockages at the insertion site. Also, who has found a CGMS that is accurate enough for dosing in the insulin sensitive, or never fires off some random alarm for no reason? Believe me, a closed loop system is YEARS (decades) away, if we ever get there... I'll believe it when I see it... (Note: I was told by a former Medtronic rep that he agreed with me that a truly closed loop system would NEVER be approved. Each time someone had a hypo and died (or crashed their car into someone and killed THEM), there would be a lawsuit). I won’t believe it until I see it….yawn…

Just HOW many times have us “long-timers” been told that a “cure is around the corner”?

My insulin pump today is not worth the $7000 I paid for it. Yes, it has saved my life, but the technology is not that advanced, especially since we can build a space station, but we are yet to produce an insulin pump that won’t break down (3 times in 1 year for me) or detect blockages at the insertion site.

Also, who has found a CGMS that is accurate enough for dosing in the insulin sensitive, or never fires off some random alarm for no reason?

Believe me, a closed loop system is YEARS (decades) away, if we ever get there…

I’ll believe it when I see it…

(Note: I was told by a former Medtronic rep that he agreed with me that a truly closed loop system would NEVER be approved. Each time someone had a hypo and died (or crashed their car into someone and killed THEM), there would be a lawsuit).

]]>