Originally Posted By: pondering_it_all
Nobody is denying that the ACA got a major backlash after it passed. We are talking about why. Personally, I kept the same employer-paid insurance I had before it passed. The only difference was that they had to cover pre-existing conditions. As far as I can tell, that is still true today. Trump has added in short term policies that don't, but most people are not stupid enough to buy those. (So why is the heart patient son no longer covered?)

Not at UCLA, which is the "Center of Excellence" type facility that he needs for his particular heart issues. Believe me, there are a great many hospitals that are MUCH closer, but they are not able to do the kind of work he will need in the future, and he loses his cardiologist who was already studying his case long before we even moved back to the LA area. Daryl's heart issues are pretty rare, even among other Fontan patients, because he was among the first to GET the procedure at The Cleveland Clinic, and his particular case carried several heretofore unseen complications.
Dr. Roger Mee, who trained directly under Francis Fontan, for whom the procedure is named, wrote extensively about our son in a medical journal because Daryl's particular case was originally thought to be inoperable. That makes our son almost unique even among Fontan kids.

The chain between Roger Mee, Cynthia Bournemeyer, Claudio Ramaciotti and Leigh Reardon was such that it is doubtful that Daryl would receive the help he needs if he has to seek out another cardiologist.

So sure, we can enroll in PIH, which is a mile and a half from home instead of all the way out in Westwood, but should complications develop, they don't have the kind of training and familiarity with his case that the above doctors have.

So, speaking from a practical sense, this basically leaves him uninsurable unless we want to just shunt him over to some "runt surgeon" who will perhaps have a nodding acquaintance with Fontan issues but who will be unfamiliar with the particular problems Daryl faces.

And here is the mother of all clinkers:
The insurance company that dropped UCLA?

It's "OSCAR".
Guess who used to run Oscar?

Jared Kushner Once Controlled a Firm Now Running a Coronavirus Testing Website

In eighteen months he might be allowed to get Medicare due to his permanent adult disability. Hopefully there won't be any complications between now and then, IF he even GETS his SSI Medicare.
UCLA has already informed us they will accept it.

But for the interim, we're up the creek without a paddle unless he just needs to get checked out for a common cold.

Medi-Cal has yet to get back to us as to whether they can cover his issues, which might include a transplant. We've been going back and forth with them for four months.

Believe me, arguing with insurance has been an almost twice or thrice weekly routine for us for his entire adult life.
At least when he was a child he was covered by either S-CHIP or CHAMPVA. All that ended on his eighteenth birthday.

Yes, CHAMPVA was never made fully ACA compliant.
Know why?

Disabled Vet Health Insurance Loophole Leaves Some Without Coverage

Since Daryl's eighteenth birthday we've spent nearly sixty thousand dollars paying out of pocket for his health insurance, which would have been provided by CHAMPVA if the Republican controlled Congress had ever bothered to close that loophole.

The way I see it, Republicans owe my disabled vet wife 60 grand.
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