Maren, Age 6

What would having had coverage for medical nutrition meant to me/my family? It feels like an insurmountable task to even try to answer this question. Looking back, it would have meant what felt like everything. It would have meant not worrying about losing our home. It would have meant not being indebted now to credit cards just to feed one of our two children a special diet. It would have meant that we may have been taking a vacation together as a family last summer if we weren’t still paying on credit cards now. It would have meant that we didn’t need to rely on a community benefit or GoFundMe campaign to feed our daughter. It would have saved so many hours fighting with, and sometimes, literally begging our two insurers to help in some way to preserve our girl’s health. Finally, it would have meant that the mother who lost her son to my daughter’s same disease would not have felt compelled to offer her son’s unopened food and formula to us who she knew needed it so desperately. I can say that it would have meant everything at a time when we needed and really expected it (coverage), whether out of decency if not for the $1K+ premium per month in premiums.  Maren now has a state waiver that was opened up when preexisting and Medicaid expansion happened with ACA. Prior to that, I had full coverage family “plan” through a self-funded plan. They denied first stating it was not medically necessary. Second, they denied coverage as it was not taken via g-tube. The final rejection was citing ERISA. My husband had insurance through his employer. It was fully funded but issued out of Kansas; they denied based on not having to follow Colorado mandates and again said we could not then follow Kansas mandates either as we were not Kansas Residents. My employer said he wanted to cover anyway and they still denied his request to the board.

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.