I have three children with a rare metabolic disorder and my youngest developed cancer in 2015. While my situation might sound unique, it is not – there are many families across the state who have children with extremely challenging (and expensive) medical needs. We have banded together to form an organization called Advocates for Medically Fragile Children NC. Our families rely on health insurance to keep our children alive and comfortable, and we are deeply troubled by the potential impact of Congressional proposals to repeal the Affordable Care Act (ACA) and cut Medicaid.
My family is in a somewhat unique but not entirely foreign position of having both private health insurance and Medicaid. There are many things that our private insurance covers that Medicaid doesn’t and vice versa, so we need both to be strong so our kids can have what they need. Our private insurance quickly and painlessly pays for out of state specialists for their rare disease and several medications that Medicaid doesn’t cover. Medicaid pays for our in-home nursing so we can keep our children at home and out of the hospital, which our private insurance doesn’t cover. (This is a simplification of the complexities of how our two insurances coordinate and complement each other, never mind the many things that neither insurance covers and we still pay out of pocket ourselves.)
The potential rollback of the ACA and proposed cuts to Medicaid would jeopardize this critical balancing act. If the ACA’s prohibition on lifetime maximum benefits is lifted, I guarantee we have already exceeded any ceiling or quickly would if it was reset. The care my children need is expensive, but it saves their lives and provides them with a level of comfort that would otherwise be unavailable. If the pre-existing conditions clause of the ACA is eliminated, my children are a huge liability to any private insurance company and would be unlikely to qualify for private insurance on their own as adults.
Medicaid, the other half of our insurance balancing act, would be greatly diminished by Congressional proposals to cap payments to states. Instead of providing services to all children who are eligible, North Carolina will be forced to choose between helping one really expensive, but nonetheless valued and loved child, versus many healthier children. The proposals to cap Medicaid funding would also eliminate EPSDT, which guarantees medically necessary coverage for all eligible children under 21. Without this protection, I fear my children and others like them will be easy targets for budget cuts.
I ask our members of Congress to please consider the potential ramifications of an ACA repeal and diminished Medicaid program on North Carolina families like mine. My children are not just my world, but they are also siblings, nieces and nephews, grandchildren, great-grandchildren, friends, and neighbors. They deserve to have continued access to all of their healthcare. Let’s work together to protect their future.
*Note—the author chose to use her initials to protect the privacy of her family.