INSURANCE LEGISLATION FOR ENTERAL FORMULA Our son Jon who was diagnosed with Crohn’s disease at age 13 has been on Vivonex enteral feedings via a PEG since 1992. This has been a crucial element of his treatment which enabled him to achieve normal growth and development, and which still helps him maintain his active and productive life. Maintaining insurance coverage for this part of his therapy has been problematic for us, and we are concerned about his continued access to this aspect of his care as he transitions into independence.

When he was first started on NG feedings his primary insurance coverage was an HMO through his father’s employment. According to every document we had ever received from this HMO, any and all care that any of us might require would be provided as long as we had complied with their rules for arranging care through the primary care physician, obtaining appropriate referrals, etc. So we were shocked when the HMO adamantly denied coverage for either the Vivonex formula or any of the supplies associated with its infusion, stating flatly that this was "not a covered service". Nowhere in their plan description had they hinted that any necessary services were simply "not covered". Fortunately, I was also employed and Jon had secondary coverage through my employment at a hospital. One provision of this hospital’ s benefit contract was 80% reimbursement for employee purchases from the hospital’s own pharmacy. So for a number of years I continued to order the Vivonex where I worked. However, the fact that our HMO could get away with flatly refusing to cover something so obviously medically necessary as Jon’s enteral feedings continued to rankle. And, as it became increasingly obvious that Jon would continue to require these feedings indefinitely, we had to worry about what would happen when he was no longer eligible as my dependent for my employer’s insurance with its own peculiar loophole.

I didn’t know anyone else on home enteral nutrition. I put out a feeler through the Mutual Help Network column of the Crohn’s & Colitis Foundation magazine. I received only a few scattered responses from other patients, but their insurance experiences, like ours had been pretty negative. I felt more and more strongly that if insurance companies were not willing to voluntarily cover enteral feedings, there must be regulation or legislation from the appropriate government entity to protect these patients from what amounted to blatantly discriminatory treatment of their particular medical need. But where to begin such a process seemed a very daunting task without more patients or families to join in the petition.