08 February 2012
Open Letter to the Colorado Departments of Public Health & Environment, Medicaid, and Children with Special Health Care Needs Unit
To Whom it May Concern,
I am writing to you as the parent of a type 1 diabetic child, and as a registered nurse in the state of Colorado. Over the past year, my daughter and I have encountered numerous road blocks to accessing tools recognized as the standard of care for type 1 diabetic children and adults. Initially, upon nonrenewal of my contract with a local school district as a result of time missed when my daughter was first diagnosed, we found ourselves confronted with barriers to obtaining a sufficient numbers of test strips. Shortly after diagnosis, we continued to have problems with test strips as well as with obtaining supplies to keep at her school. While I would willingly have my daughter's kit travel back and forth, the school understandably felt uncomfortable with that scenario lest our daughter forget needed supplies at home. Still, both CHP+ and Colorado Medicaid raised challenges to filling enough supplies to have a separate, semi-stocked kit at her school both last spring and this year. Ultimately, even though our family continues to qualify for various assistance programs while I look for full time employment, I purchased the needed items out of pocket, to the absolute dismay of the school nurse and American Diabetes Association Advocate assisting us at the time.
My daughter experiences nocturnal hypoglycemia on a fairly regular basis, and as a result now contends with hypoglycemic unawareness. I set an alarm and wake up every two to three hours every night to check her blood glucose levels. I do so to prevent a severe hypoglycemic episode which would certainly pose serious negative consequences for my daughter, and unduly tax the public health care system with the resulting, necessary emergency care. As a single mom, I find that I am unable to continue to meet this burden of care giving without support, and as a result, began the process to acquire both an insulin pump and continuous glucose monitoring system. Over the ensuing months, I have listened to countless health care providers inform me that we will have no trouble with Medicaid covering an insulin pump, but are unlikely to gain partial CGMS coverage. In order to avoid severe nocturnal episodes of hypoglycemia, we send our daughter to bed well above what constitutes a healthy blood glucose range for a child her age, have altered her basal insulin regimen multiple times to try to decrease the substantial drop in blood sugar levels, and found ourselves faced with worsening insulin resistance and an elevated A1C value as a result.
At Christmas time, we completely ran out of test strips, though not for a lack of trying to avoid this. Having caught an upper respiratory infection at the beginning of winter break, we followed her endocrinologist's instructions and tested her blood sugar every 1 to 2 hours as instructed by the sick care algorithm. I realized that we would run out at noon on Christmas day, and tried to fill her test strips four days early to avoid problems over the holiday. Sadly, Medicaid failed multiple times to return urgent requests for help from myself and pharmacy staff. The Medicaid customer service representative who finally answered one of the pharmacy tech’s phone calls did so from her home – clearly accessing my daughter’s protected health information from her home computer in front of friends and family. Despite the life sustaining necessity of test strips for blood glucose checks, she refused to fill the prescription, stating we would have to wait until the Tuesday following Christmas. We again had to pay for strips out of pocket. Even though numerous programs exist to help defray the high cost of test strips, recipients of Medicaid are disallowed participation, and we paid over $65 for a four day supply of test strips, and had to limit how often our daughter could test at a time when that practice posed clear dangers for her health both long and short term.
In January, the number of injections my daughter received daily increased to 7 per day due to attempts to mitigate night time lows by splitting the basal insulin dose, and the necessity of covering snacks or providing correction doses due to worsening insulin resistance. Her A1C increased again (having gone from 6.3 to 7.1, and now to 7.3 ), and 3 hourpost prandial blood sugar levels often remained well over 250. The elevated blood sugars, continued hypoglycemic events, and wide swings resulted in our daughter suffering from a weakened immune system. (Research documents a decreased immune response with blood glucose values over 250, and the body's inability to heal with blood glucose values greater than 300.) In the last 6 weeks she has been ill with an upper respiratory infection for at least 4 weeks, and a gastrointestinal illness over the first week and a half of January. Just this week we again sought help from her regular doctor only to discover that she now has pneumonia. Her insulin needs have more than quadrupled, and blood glucose levels seemed stuck in the low to mid 300s for the better part of this last week. We again could not fill test strips, nor were we able to fill her new pen needle prescription of 200+ pen needles per month, receiving only 100 which is not enough to cover two weeks’ worth of insulin. Instead, we had to rely on the generous support of other parents of type 1 children while we hold our breath and wait for insulin pump therapy approval and training.
Imagine my surprise today when I learned that Colorado Medicaid denied coverage of insulin pump therapy despite her diagnosis of type 1 diabetes – uncontrolled, a 7 day blood glucose average of 235, and the fact that she now receives 8 injections per day and has produced trace to small ketones consistently for the last week. After hours of phone inquiries I have yet to reach a live person to discuss the specific reason insulin pump therapy was denied. (CGM was as well, though I expected that narrow minded response to a treatment modality that promises to protect my daughter’s health and save the state of Colorado countless dollars in avoided complications caused by persistent low and persistently high blood glucose values.) Now that the antibiotics have begun to do their work, her blood glucose levels are again trending down, and she has suffered three episodes of hypoglycemia today. Last night I had to maintain her blood sugar close to 250 in order to avoid dipping into the 50s or 40s, and I will need to do so again tonight, something a parent should never have to do, and a CGM would make it possible to avoid this negative practice.
I keep meticulous records of blood sugar values, insulin administration, adjust her insulin to carbohydrate levels cautiously and conscientiously, ensure she eats a healthy balanced diet, wake every two to three hours every night to test and treat as necessary, and despite this careful attention, I continue to borrow against her future health in order to minimize her risk today due to the narrow sighted decision of the Colorado Medicaid program to deny coverage of life sustaining treatments consistent with the recognized standard of care. I often wonder at the negative outcomes she might face if I did not possess training and experience in pediatric nursing, and at the health care decisions on the part of the state public health insurance program that will (not might) lead to catastrophic medical care needs and expenses down the road.
I worked in hospice and palliative care nursing prior to hurting my back in 2006. I understand the importance of utilization control measures, cost containment, and just how well consistent treatment aligned with accepted standard of care aligns with that goal. While it might seem like a large output of resources up front, the truth is that coverage of insulin pump therapy and CGM is an investment in the future well being of Colorado citizens, in this case its diabetic youth, that will prevent over utilization of system resources for negative, acute outcomes in the future, and simultaneously supports parents like myself in gaining the ability to return to the workforce full time as a result of the provision of that needed support. I urge you to examine and reassess the decisions made at the state level with regard to diabetes self management and access to therapies aligned with the recommended standard of care for type 1 diabetics.
Kirsten Nelson, RN BSN, MA Ed Psych