Justin Delgado is husband to Kacie Doyle-Delgado, diagnosed at age 11. After more than a decade together, he considers himself to be an expert carb counter and Dexcom inserter. He graduated with his Master of Science in Finance from the University of Utah in 2013 and has been working in commercial banking since then. He attended his first Friends for Life conference in 2015 and is looking forward to volunteering with the teens.
September 20, 2010
Question from Marlborough, Massachusetts, USA:
Why won't the medical experts take a loud, strong stand in support of type 1 diabetics to have more than six test strips a day? In the last decade, with all the advances and the possibilities that have come with the various regimens of MDI and pumping for the youngest and most vulnerable, why would they not back up what they have been recommending, prescribing, and teaching this new age diabetic population? I am appalled that kids that have met these challenges and achieved their targets are now having the very tools that they utilize to stay in target taken away. For example, my daughter, diagnosed in 1999 at age three, has always tested 10 to 15 times a day. She takes insulin four or more times a day. We have always used an electronic log, first, the Accu-Chek Complete and then the One Touch Ultra Smart Meter, as soon as it was available. She has maintained an excellent A1c, 6 to 7, for over a decade. Now, in Massachusetts, it's six tests a day and paper logging. Other than this meter and strip, we are utilizing the cheapest most effective insulins and administrating it with a syringe so, not the expensive types of various other technology that has been offered to her. I am devastated by this lack of investment by the pediatric endocrine community to fight with us for what our kids deserve, the level of care that we know and appreciate and more than anything, the ability to monitor and act to keep our children healthy and safe. Is anyone (any physicians) taking up this fight for our kids? Here in Massachusetts, I can't find the passion to support a flea! My daughter is totally upset/stressed/frightened/angry about this and I think it's very valid. As her mother, I am more devastated than I was at her diagnosis, All this work, all this knowledge, incorporating intensive diabetes into our lives so it's just blips that we deal with throughout the day...to this antiquated regimen of test strip limits...is just mind blowing. I never thought I would FAIL my child and, so far, I am and it's heartbreaking. I can't ensure her it will be okay and we can do this. I don't know how to do diabetes poorly and we have had such consistency and success. Do you have any suggestions?
Sorry that you are having so much trouble. I practice in Massachusetts and our own diabetes practice has promoted intensified treatment regimens for more than two decades with superb results using MDI or CSII coupled with frequent blood sugar testing. We have not had similar problems with any of our insurance carriers even though, sometimes, there needs to be several layers of appeals and lots of paperwork. If there is documented hypoglycemia unawareness, documented wide glucose excursions or other specific reasons for frequent testing, this, too, has been relatively easy to get coverage. So, I would urge you to go back your diabetes team and find out what needs to be done. If there is frequent testing only because of anxiety reasons, then this is much more difficult to substantiate from an insurance company perspective. In those who refuse to keep records or download to computers, then this, too, becomes impossible to substantiate. Knowing exactly what is required for individual patients often is key to being able to fight through the appeal process. While there are numerous stupid insurance company policies and much unnecessary paperwork, much of what you are complaining about does not need to happen within Massachusetts and elsewhere around the country.
Additional comments from Dr. David Schwartz:
I very much appreciate your frustration with “the system.” It may well be true that some pediatric endocrine providers are less willing to jump on the “latest/greatest/newest” gizmos available. As a whole, pediatricians are a conservative bunch, medically speaking. It’s also true that some technologies/medications, etc. are approved for adults but not (yet) approved for children and that can influence their uses. But, I think a big issue is cost: clearly children are “second class citizens” in this country – at least as relates to health care. Folks with private insurance can probably pay (through the nose) to have super-delux-primo-Rolls Royce health care. Medicaid families are not so lucky and states wish to limit expenses. I will say that the state of North Carolina recently passed legislature that allows for unlimited testing supplies (for now, anyway).
That said, I do not agree that ALL diabetics need to check their blood glucoses 15 times a day. Frankly, I am having a good day when 50% of my patients with diabetes show up with their meter or the log book, let alone having checked an average of four times a day. Most patients do need to check more often than they do. Studies clearly show that the more often glucose is checked, the better the glycemic control. But, whether this is predominantly “cause-and-effect” is not so clear. Maybe families like yours are just super-vigilant and would do well regardless.
Having said that, I would presume that your pediatric endocrinologist will be your child’s advocate and will be more than willing to compose a letter to your insurer to support more authorization for more checking, more technology, etc. But, the unfortunate reality is that insurance companies influence health care, given costs (profit) controls.
Additional comments from Dr. Larry Deeb:
These are interesting times. Insurance companies in the U.S. dominate us in more ways than we ever imagined. At least Medicare has a single set of national rules.
A large pediatric diabetes practice may have 50 different insurers, easily. Each will have different rules. These include your situation. They frequently change strip companies with no notice so a patient arrives at the pharmacy and can’t get supplies. Likewise, they change insulins. Then, to keep a patient on current strips, including ones that can communicate with pumps requires prior approval. Somewhere, there is a form if you can navigate the phone tree to find it. Then you fax it, usually three times before they tell you either it was lost or they never received or it is the wrong phone number, even though it was the number in bold print on the form. Finally, if you are lucky and after an hour of work, they might approve.
I am in a solo pediatric endocrine practice with one nurse and 600 kids — do the math. I return to my first statement. The insurance companies own medicine. At some point, my nurse can’t do it all and still actually care for patients who need her. I am sorry, but it isn’t going to get any better any time soon. While this note might sound like I don’t care, I am just overwhelmed and have to prioritize the time my staff have to face issues. The child who can’t get even 100 strips has priority over the one who can’t get 300.