re: Pre existing conditions

I know most people don't have to deal with this, so I'm wondering what you'd do if you're in my shoes. And feel free to educate me on the nuances of the currently passed bill and any desired changes regarding pre-existing conditions - in either direction (more or less coverage).

My daughter has not one but two very rare genetic congenital conditions. One is a connective tissue disorder that will cause her migratory problems and chronic pain her entire life. Obviously this will require significant medical intervention across her lifetime.

She also has a very rare immune deficiency. It requires expensive immunoglobulin replacement therapy weekly otherwise her life expectancy is extremely short. Despite that, she's still at risk of frequent infection and will labor through infections longer than typical people. Her doctors are aggressive with her treatment due to these issues.

Because of all of this, we are doing our best to prepare ourselves financially. Luckily I have solid employer insurance. What does concern me is the eventual impacts of my daughter being placed into a high risk pool that will bleed over to my employer insurance plan, and cause not only her doctor visits and intervention costs to shoot up, but the weekly immunoglobulin costs that are already high to be completely unaffordable.

These are issues we obviously cannot avoid and will do our best to prepare for. However we hope she has a long life. Despite our best efforts, her care will be expensive whether her costs go up or stay the same they are now.

What is the board's opinion on situations like this?