Cindy - I want to smash people on your behalf. awful.

Thank you, msbelle. I left the BC/BS case manager a second voice mail (DH called the first time). My um...recording time expired while I was laying everything out for her.

In goodish news, Mac texted me. nothing substantial, but contact.

Contact is good. I'm keeping you both in my heart. It is very difficult to parent young adults, particularly those who think they've got it figured when they don't.

Cindy, I am angry and outraged on your behalf. It is so completely heartless the way crucial medical decisions are made. I am glad he has his parents to fight the battles. Too many people don't have an advocate.

Thank you, Laura. C is 21, so he handles all the usual stuff surrounding his treatment, but stress is known to exacerbate Crohn's, so when something this frustrating comes up, we take over. It's still a little too much for him (it's a little much for US too).

Good lord, Cindy. No case manager? That is just absurd. The whole thing makes no sense at all.

Cindy, this is ridiculous! I am so angry on your behalf.

now BC/BS wants to refuse (but hasn't yet) both the biologic that worked well for him for the better part of two years (Remicade, i.e. infliximab), and the biosimilar that caused problems after two treatments (Inflectra, i.e. infliximab-dyyb), and instead, move him to one of two other biosimilars (Avsola, i.e. infliximab-axxq) or Renflexis (infliximab-abda).

This honestly feels like BC/BS is trying to punish you for daring to complain.

That's exactly how I feel, Teppy. Like they're doubling down. The thing is, their double-down makes no sense.

They're saying he can't stay on Inflectra because he "had a reaction" (that's not really what this is -- it's an adverse effect that came on about 6 weeks post-infusion), and they're saying he can't go back on the Remicade, because he "had a reaction to Inflectra," but Inflectra, Avsola, and Renflexis are all effing infliximab biosimilars. I feel like I woke up in cuckoo land.

Also? I haven't even talked to BC/BS yet, so it's not like I had a chance to alienate them yet. And our GI is this young, sweet, brilliant Korean doctor, who is as polite and reasonable as the day is long. He's a saint, so I can't imagine he did. I have never seen him put a foot wrong.

In the letter I sent BC/BS yesterday (with *our* appeal, to which they still haven't responded), I was polite to the point of sweetness, and even worded it like they were already my allies, instead of my sworn enemies.

(They are SO MY SWORN ENEMIES!)

This exactly the kind of story that makes me feel more sure than ever that I've got to get away from getting my paycheck from big health insurance. There's nothing I can do "from the inside" to make that broken system better.

Some things should not be run as a business; health care is close to the top of the list.

That's it. Profit is not the appropriate motive for healthcare. Health is.

That said, if we had the European-style single payer plan I've dreamt of since I used to work at Mass General, I'd be going through something like this, too. The biosimilars are in much wider use in Europe, because they're less expensive. And most of the time, they're good enough.

Timelies all!

I'm sorry BC/BS is being so awful about C's meds, Cindy.

Cindy that is so infuriating and it's just... health insurance companies are the devil, I hate them.

I have another update about Jay-it's good news. I don't know what happened but for almost 30 days he was pretty much unresponsive but now that he has shown improvement his improvement keeps making jumps. He can't sit up by himself but once he's had help getting in a sitting position he can stay in it.

He blew a kiss to his girlfriend.

He ate applesauce! So they are putting him on thickened liquids and thickened pureed foods. He still needs a feeding tube and he still has a trach but this is all really good news.

His girlfriend isn't going to be his son's legal guardian, the big issue is dealing with Jay's ex wife. Although contact with her will be limited- she violated her probation by getting a DUI with property damage and currently in jail. This is her 3rd DUI in 10 years so she's facing felony charges. Her last DUI was , I think Mom said 4 months ago. She was also driving with a revoked license.