Letters to the Editor : August-September, 2009
Mon Has CGM Concerns
I read your article about CGMs (Get the Facts on Continuous Glucose Monitoring, June/July 2009) and felt you left out three-quarters of the facts. You basically only gave the positives. You touched on the "fact" that it is expensive and requires a "commitment" but that was far too light
My son has tried 2 different CGMs. The result was the same in both cases. The first one he tried was the Medtronic Real-Time System. I bought the new pump and he tried it an extended period of time (8 weeks). I begged them to take it back. I will say Medtronic tried to work out the bugs with him but there were just too many issues. The second attempt was DexCom. The issues were the same.
The CGM companies want you to calibrate twice a day at least but you cannot do that if you have just eaten, dropped or risen more than 40 points in 20 minutes, if you have just exercised, or if you have active insulin on board. Type 1 people have very little time that one of these issues is not in play. Also, you don't want to calibrate too close to the last calibration.
My son's CGM would be off as much as 100 points at times. When you try to recalibrate when it is that off, it shuts down and you have to start the whole start up process again. That can be quite involved-especially when it shuts off in the middle of the night. It is the least reliable at night. The Medtronic helpline person told me it is because he is sleeping on it. Well, most people don't sleep standing up. However, after a few days with the CGM, my son and I were doing a little sleeping standing up since it kept us busy even during the night.
It gave lots of false alarms. The monitor would lose contact with the pump. The sites did not last more than two days usually before the site itself would start having trouble. He did have one [site] last six days once but it was not problem free. He personally thought the sites were uncomfortable and there was pain involved in putting it in. If it had worked, the pain would have been worth it, however. The sites for the CGM do not heal as well as the sites for the insulin pump. It is hard to have enough sites for both the pump and the CGM when the healing process is longer for the CGM. He was doing more finger sticks than ever and his A1c went up.
I have been told that there are people that have had great success with the CGMs-by magazine articles, doctors, and the companies that make them. I have never met a real person that uses them and feels any differently than we do. At this point, my son will not even consider trying another one.
As Paul Harvey use to say - "That is the rest of the story." I feel these are important facts that should be included in [your article].
I have been discriminated [against] by my employer in regard to my diabetes. I have been through the Civil Rights Commission and received a right-to-sue letter from the State. The first right-to-sue letter from EEOC expired before I could get a lawyer. Now I am on the end of the time line to file in state district court.
I read the article We Can Work it Out, (DiabetesHealth.com, Dec 1, 2005) and it gave me some courage. In the state of Iowa it is very dificult to get any help. No attorney wants to go against St. Luke's Methodist Hospital and the Iowa Health System which provides the health care benefits package for St. Luke's Hospital employees. The article states that there is an ERISA law against the employer charging a higher premium or refusing coverage, yet that is what happened to me and neither of the civil rights committees seemed to find anything wrong with it.
I was also not allowed a scheduled meal break to take care of my diabetes. Again no one seems to find anything wrong with this picture. In fact, in Iowa, one can work an 8 1/2 hour shift and not get paid for the 30 minutes and not get a lunch break and there isn't any law against that. Now because my 90 days for the federal right-to-sue elasped I have to try and prove my case by myself in state court.
I am about ready to give up. Your article gave me some encouragement. If you know of any case law in the state of Iowa on discrimination, esp. diabetes could you send me the names of the case so that I can look them up and use the information in my case when it gets to the proving stage of the lawsuit. Well, that is if I manage to file the case correctly in state court. I am not a lawyer and this is proving overwhelming. I have been told that no one wins without a lawyer. Any ideas?
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Your story is a very important one and I thank you for sharing it. Have you contacted the ADA? On their "advocacy-and-legalresources/discrimination page, I found a lot of information on what you can do and where you can get help. Here's what they say:
"The American Diabetes Association is committed to ending discrimination against children and adults with diabetes by providing information and assistance to people with diabetes and their advocates. We use a four-step process to end discrimination: educate, negotiate, litigate, and legislate.
"This page provides links to a great deal of information that can help people facing discrimination, their lawyers, health care providers, and other advocates. ADA has additional written materials available by calling 1-800-DIABETES. If you are being discriminated against because of diabetes at work, at school, by the police or in correctional institutions, or in public places, you can request assistance from the ADA by calling 1-800-DIABETES. A representative will send you helpful information and will send you a form to request help from one the Association's Legal Advocates."
In addition, I heard an interesting disability rights lawyer speak at a diabetes conference last year. I am not sure it's necessary that your lawyer be in Iowa even though the case is in Iowa. She was a staff attorney for DREDF (Disability Rights Education & Defense Fund, www.dredf.org)