Justin, Age 22

Our 22 year old son is about to age out of coverage for his formula. He is allergic to everything, except this one formula and distilled water. His care has been managed at Johns Hopkins since he was 2, so there is the cost of traveling from the Midwest to Baltimore for visits over the years. In the past, food trials have consisted of only a 1/2 teaspoon of a single ingredient food, and it took him months to recover from the reaction to his food trials. There is absolutely nothing else he can tolerate, other than distilled water.

It is life and death for him. Our financial lives have revolved around formula costs and coverage for 22 years now and we plan to work as long past retirement as we can to pay for formula. Medicaid is not a solution, as our state doesn’t cover his particular formula. We have done everything right. We work hard at professional level jobs and save all that we can, but we don’t know how to provide for his formula needs in the future, as we will need to retire someday. We even managed to successfully lobby an international pharmaceutical company to remake his formula after they replaced it with a new version of the product that he could not tolerate. After all of the hurdles we have managed to clear across those 22 years, mandated formula coverage is the one where we had no success. We would do anything for him, but we can only work so long past retirement to pay for formula. At some point our health will fail and it is fundamentally wrong that his life saving formula is not a covered medical expense for most plans in Nebraska.

My husband’s employer is self insured, so covered our son’s formula after we won an appeal years ago. However, the rewrote their policy after that so that no one else would ever be covered, but our son is grandfathered in. My husband has been trapped at that job his entire career because of the formula coverage, that we can’t afford to walk away from. We have 3.5 years before he ages out of coverage. It is $24,000/yr, for life. The one formula that works for him is not covered by medicaid in our state. We are almost retirement age and plan to work as long as we can to pay for formula. For 22 years now, we haven’t spent money on ourselves or our other children to make sure we could buy formula if this year’s appeal doesn’t get approved (it is an annual appeal process).



Other Nebraska residents who rely on medical foods