[drc500free]

Welcome to the world of rare (or at least not common) chronic diseases. Private companies work by firing their least profitable customers. If you have a less common disease, the insurance company can simply claim that your preferred treatment is insufficiently backed by data.

With a small patient population, there is no incentive for for-profit companies to fund a study. And because few can afford the treatment, you can't get real world data to use in place of a study.

[robocat]

> Private companies work by firing their least profitable customers

Are there any co-op or non-profit health insurance companies available to join?

In New Zealand the single biggest health insurer is a non-profit society, Southern Cross Health Insurance[1]. Unimed[2] is #4 and it specialises in company plans even though it is also not-for-profit.

They are both very cheap compared to US plans, in part because they only need to add elective or improved cover on top of the government public health system (which is mostly free to use, but outcomes can be good or bad depending on the specific medical issue). Government healthcare doesn’t have quite the same perverse incentives for chronic healthcare, however it still has cost limitations so it isn’t perfect.

[1] https://www.southerncross.co.nz/society

[2] https://unimed.co.nz/about-unimed/

[drc500free]

Not that I've found, and there isn't much consumer choice since so much is built around the employer-provided model. You've got one for-profit entity making decisions about the offerings of another for-profit entity, and either one would happily fire you (either as a patient or as an employee) for making costs go up.

The closest US equivalents to the NZ elective insurance is probably the Medicare Supplement plans. Non-profits like AARP (a major US lobbying group / non-profit for retired people who use Medicare) sell their branding rights to for-profit companies like UHC. So even if you go through a non-profit, the actual operator of the insurance plan is a for-profit.