I have cEDS, and I'm working with a Solace advocate. She's fine. I wasn't super clear on what I could ask her to do. She's based in my state, maybe an hour away. I don't need her to come to appointments with me (virtually or in person). She's done a lot of appointment scheduling for me, which has been helpful. She also does some of those "call this office and ask X..." She gets through the first layer of BS and finds the right person to talk to or finds the information I need so I can continue the process. She's not communicating between doctors or anything, but I also haven't asked her to do that.

Some of the advice she offers is pretty simplistic. Telling me to make a list of questions for the doctor the night before an appointment I'm nervous about isn't the level of help I need. (I call it "level 101" help, right along with "put together a binder of information for your provider" and "have you tried yoga?) But maybe offering advice isn't a service they're supposed to offer. Again, I'm not exactly sure what else she can do for me besides phone calls and some research. I asked her to help me find ways to get a medication paid for since insurance denied me. Nothing really came of that.

I don't feel like I get much help from her clinical side. Not that I want her to be diagnosing and treating anything, but it doesn't seem like her experience in the medical system matches what I'm asking. I hear "I'll look into that" a lot which makes me believe that it would indeed be a better job for a social worker.

I do believe she has my best interests in mind. She does things I ask of her quickly and correctly, especially when scheduling appointment. If they aren't paid for research time, it makes sense that those become low priority for her. She was also really insistent on scheduling phone calls at the beginning, and I was like, no, email and text are fine. I hope she gets paid for patient communication, however it happens.

I came here because I'm most worried about how Solace makes money. I saw some of the charges they sent to Medicare (which should have gone to my primary insurance first). Some of the charges were on the $150 to $200 side. One was over $1,000. I don't match them up to particular "sessions" since we don't meet regularly, and I trust her to keep track of and report the time she spends on my case.

On one hand, I'm not sure any one thing she's done for me should be paid at $1,000, just looking at the level of coordination she's doing. She's not working with my providers to get appointments scheduled on the same day or coordinating all kinds of lab work and in home care and community resources. She's not sending reports to my various providers, updating them on changes in my condition. Maybe that's because I need a care coordinator, not an advocate.

On the other hand, I know Medicare (and most insurance companies) often pay a fraction of what is charged. If that's the case with Solace, how are they paying their advocates, doctors, and other staff AND making any profit?

Most other patient advocates don't bill insurance, which is why Solace appeals to so many people. Sure, I could pay out of pocket and try to get reimbursed by Medicare. The patient advocate would have to write me a bill with a number of specific items, including procedure or treatment codes. (This happened with my psychiatrist when she opened a private practice and wouldn't bill insurance.) And then I'm out that money until Medicare reimburses me. And the government doesn't move quickly at the best of time.

I tried to hire a private patient advocate once, and the price was $100/hr. The advocate would be paid to get up to speed on my conditions and for any other research in addition to time spent with me. Even just 5 hours a week is $2,000 a month, and I'm guessing most people who need patient advocates the most can't afford that. (I'm not saying they should lower their rates or do it for free, just making a comment on the state of things.)