Rant: Specialty clinics - they seem so predatory????

So I've been living with what seems like hEDS & POTS my whole life, and a road trip last summer essentially beat me with a baseball bat. The first few days back home, I couldn't hold a fork or even chew my food without pain and exhaustion. I had suspicions, but pretty much shrugged it off as: "I'm managing, it can't be that bad of a case for me... I hurt all the time but I'm living perfectly fine." Then the road trip flipped a switch or something.

Anyway. That was late July 2024. In August, I got a referral for a geneticist - something like 19 months away. I've been twiddling my thumbs since, on celebrex and some PT. The first doc i saw who provided the referral and the rx, shrugged when I asked what else i could do, said "try an anti-inflammatory diet" and walked out.

I went in with two months of pain data a week ago printed off Chronic Insights (I'm not paid, I just really like the app). The hEDS criteria from the EDS society site for primary docs to diagnose with. This second doc, looked it over, and said, "I won't deny you're in pain, and it -looks- like I have reason to get you to a specialist. But I don't have knowledge to feel confident in dx'ing this condition. Besides, there isn't a whole lot we can DO about it anyway." She looks at the EDS society's provider resource and realizes that no medical doctor in our entire US state is on the list. Just OTs, PTs, Massage Therapists, and a dentist. Not even the geneticist i'd been referred to 8 months ago. She asks if we'd be open to going out of state. We said yes. She said she'd follow up with me, but hasn't yet. I went home and looked up a neighboring state in which we have family & friends. Immediately, i find these SPECIALIZED CLINICS FOR PATIENTS WITH MULTI-SYSTEMIC CONDITIONS LIKE EDS. I can practically hear the choir of angels. So I contact them. Only to be told, in VERY CERTAIN TERMS $3500+ for your first visit, cash only and no insurance. Full day appointment. $+1500 for in person appointments after that. $700 for telehealth visits. And a 17-20 month waiting list. What the actual FETCH???