From what I just wrote in answer to someone's post on L&V:
Yeah, believe me--no child is drinking EleCare or Neocate because he wants to. The stuff tastes terrible. In fact it tastes so bad that many patients who need to switch to the formula in adolescence or adulthood REQUEST a feeding tube because they can't make themselves drink enough of it (a lot of the kids who are diagnosed in infancy already have a gtube because they don't drink enough to survive without pump feedings). And we're not talking about a supplement, or a choice here; due to this disease this is all our kids can have.
They actually chose a really good sample family for news coverage--parents working as a nurse and police officer, who do have insurance but the insurance won't cover the formula. This is the typical face of the families with this problem--we work, we don't qualify for WIC (which would only cover the formula until the child is 3 even if we did qualify), we don't qualify for any of the state insurance programs for the UNinsured or low-income families, in many states we don't qualify for medicaide waivers (we don't here in MD because they've created a catch 22: you can't qualify if your child doesn't require 24-hour a day nursing to not require living in a hospital setting, but since no one automatically qualifies for the waiver, parents have to train themselves to provide their children's care without nursing, thus the only way to get on the waiver is to either have your child institutionalized for care or to already have some insurance-covered home nursing that you're in danger of losing).