>Our medical system where we rely on individual doctors for primary care is really flawed but it's better than any alternatives that we have (or that we can afford anyway)

The US one I presume? Says who? Based on what metric? We can, and other countries have, do much better.

That this parent "is “exhausted” by years spent campaigning to get doctors to take the illnesses seriously" doesn't say much.

It's not like she had to go the public health system and didn't have the option to go on "individual doctors for primary care" if she could afford it (in fact it would have been way more affordable than in the US).

She campaigned to spread awareness for the cause, not for them to treat her own special case.

Second, the average person would be much more exhausted when chacing their own (or kid's) treatment trying to afford hellishly expensive treatment in the US, sacrificing their kids college fund or their own pension (or even ending in bankruptcy (CNBC: "Two-thirds of people who file for bankruptcy say medical bills or other issues related to illness contributed to their financial downfall").