Elliott was diagnosed with Homocystinuria, or HCU, at 2 years old after suffering a series of blood clots throughout the brain. Once diagnosed, we immediately began treatment, which consists of a very low protein diet, medical formulas, Vitamins B6, B12 and Folate, as well as a medical supplement called Betaine. With the proper treatment, we have been able to keep Elliott’s homocysteine levels controlled and today he is a happy, healthy 5 year old!
Thankfully, Elliott’s medical formulas are provided to us. I simply can not imagine the financial impacts on a family if they were not! For this, we are grateful. However, low protein medical foods are not. Elliott is only able to have 11 grams of protein through foods each day. If you’ve ever tracked your protein intake, this is NOT a lot. We find ourselves struggling to find foods that Elliott can eat, that taste good and that provide him with some nutrition. We pay out of pocket to buy medical foods like pasta, breads, and baking mixes so that Elliott can stay within his protein allowance. These items are incredibly expensive and unfortunately, we must buy often as Homocystinuria is a life-long disorder. With the help of Compassion Works Medical, I attempted to make an appeal to our insurance to cover these medical foods, but it was denied. I even tried for a second appeal, which unfortunately was not successful either. Our family prays for a day when there is a cure for HCU, but until then, we will rely on medical formulas, medical foods and supplements as a way to keep Elliott healthy. We hope that in the meantime, we can get the coverage that we need for ALL of Elliott’s nutrition.
Through the Medically Complex Children’s Waiver, Elliott qualifies for Medicaid. His medical formulas (HCU Anamix and Prophree, as well as his Betaine) ARE provided to us. Medical Foods (like those you’d buy from Cambrooke, for example) are NOT included and we pay out of pocket for these. When I first made an appeal to have Elliott’s medical foods included in coverage, that was to Blue Cross Blue Shield’s State plan, which used to be Elliott’s primary coverage, with Medicaid as secondary. Currently, Medicaid is Elliott’s primary/only coverage.