Bubbles and other news

Since symptoms started to settle back down in February I’ve been enjoying a kind of bubble. The day to day variation in symptoms became more consistent. I began to be able to get out of the house more and feel periods of near normalcy. There’s been a lot more laughter and happiness. And I began to feel a sense of safety. I slipped into some routines and tried to forget how we ended up here, ignore the world, and not worry about what the future might hold.

This bubble was pierced briefly for a couple of days in March when we got a denial letter from Anthem. It turned out that Kaba Fusion (the people who manage the at-home infusions) had reapplied for a 12 month authorization earlier than expected and hadn’t told us they were doing this. We had expected this renewal to occur in April/May since the original six month authorization expired mid-May.

Anthem’s letter used the same “not medically necessary according to their policy” language that Cigna had used to torment me last year. It arrived on a Saturday, leaving us unable to do much about it for two days.

Anthem somehow ended up in this picture because the Blue Cross Blue Shield system is a kind of franchise. Different companies have the Blue Cross or Blue Shield (or both) rights in certain markets. Our insurance is technically through Blue Cross Blue Shield of Massachusetts (BCBSMA). The premiums are paid to them and the plan is an HMO plan that covers the New England states. BCBSMA is a non-profit company.

Anthem is a giant for-profit company that has been gobbling up independent Blue Crosses and Blue Shields around the country, in the process converting non-profits into for-profit entities. In 2000 it bought Blue Cross Blue Shield of Maine. And it turned out that after we moved to Maine everything is sent to the local Blue Cross Blue Shield “franchise”, which is now Anthem, for processing.

So Anthem received the authorization request, and applied a completely different policy to the review than BCBSMA uses. Anthem’s policy that was referenced in the denial letter does not list the condition (G61.89 and G62.89), whereas BCBSMA’s policy does.

In general we have found Blue Cross Blue Shield of Massachusetts to be very helpful, albeit a bit bureaucratic. A call with BCBSMA is a night and day experience compared to what we got when dealing with Cigna. They’re always able to find an answer or resolve a problem. I don’t fear talking to them. (Gee, it’s almost like being a non-profit makes a difference to a company’s attitude.)

This letter puts me in terror all weekend waiting for Monday to arrive. I am completely shut down trying to hold it at bay and survive until it’s resolved. It all flooded back. What I’d been through last year, and just how bad things had gotten at the end, the ridiculously stressful fight to get treatment, and the thought of going back downhill to that or worse had me in a literal state of terror. During October I had started to think about suicide, not because I was depressed, but because when you’re that incapacitated and its only getting worse, and there’s no real hope of improvement without treatment, then almost everyone does. I was really tired of getting worse. I was sick of being forced to jump through hoops to prove my illness to these horrible insurance companies (Cigna and MetLife). I think I was a few months away from it that point.

This was also wake up. When we came out here, and through December and January, the plan, which then continued as the operating assumption, was we would return home after about six months, regardless of what happened with Cigna and Juniper. Maybe six months would be enough for me I hoped. Or maybe after proving the treatment works out here that would convince Cigna once back home. We were close to turning around and going home a couple of times during December because things were very hard moving out here. It put a huge amount of emotional and physical stress on us both in ways that have left marks. We were lucky instead of going home we were able to find a nice spot in Portland that allowed us to settle in and give the medicine time to start working. After this letter and the memories it raised, it became absolutely clear to me that so long as I was still being treated out here, I would never go back to Seattle without a guarantee of continued treatment there. I simply could not go back to how bad things were.

So all weekend I feel like I’m back in the hands of this capricious system that put us through hell last year. That delayed treatment by months while I got worse (meaning I’ve only just recently got back to the level I was at when we asked for treatment). That may have permanently damaged my chance of a full recovery. We tried easing our distress by thinking that we could “just” move to MA so it can be authorized by BCBSMA again, like they did the first time, and then “just” move back to Maine after again. But theories really aren’t very comforting, and being constantly forced to play these absurd games has taken a big toll that’s left a mark on my psyche.

Come Monday we get some conflicting information. BCBSMA believe the authorization request should be forwarded to them for approval. Anthem say they can’t do anything it’s up to an external company called AIM who they contract with to do the reviews, and we need to call them. AIM were a complete brick wall, they can’t tell us anything or do anything. There is quite seriously no point in AIM having a phone number and staffing it. With much stress and many phone calls, by the end of the day Kaba Fusion has worked with my wonderful doctor to fix it. It took one phone call from him to the reviewer at AIM, and they approved it. They didn’t require resubmission or anything.

What the fuck. Phew. Relief. But still, what the fuck. Mega-for-profit-corp Anthem with its IVIG policy that is incredibly similar to Cigna’s (it’s as if there’s a template they all crib from) has approved 12 months of IVIG treatment after one phone call. This is on top of BCBSMA approving it within 24 hours of submission last November. We’re very much proven right that there was a huge problem with how Juniper’s health plan handled my case last year. (The five doctors we had supporting my case should’ve tipped them off. But I guess that’s what happens when there are no repercussions for being wrong and the only motivation is cost.)

I put the terror away and go back to my bubble. Weeks of infusions separated by coffees, reading books, being taken for the odd expedition in the car, doctor visits, and watching so much TV. (Sooo much TV. But the brain’s bandwidth is still very limited.) Until a couple of weeks ago, when my bubble went pop for a quite unexpected reason.

We had submitted all of our information for an independent review to determine medical necessity. The amount of time gathering records, asking doctors for letters, and so on is ridiculous. The amount of time doctors have spent on my case just to get me treatment and keep me in treatment is ridiculous and unfair to them, and it doesn’t seem to ever stop. (I don’t think I’ve mentioned the MetLife situation yet where they tried to delay reviewing my case for 3 months without paying me while they gathered records *they already had*.)

The review came back affirmative, supporting the medical necessity of the treatment. Juniper sent this to Cigna (the administrators of Juniper’s health plan), and with some arm twisting on the part of Juniper, Cigna will now approve treatment back home. There’s a lot more that could be said here about how things really work and have gone down, but I’ll save it.

Good news, right? Well that’s the news part. We’re finally completely vindicated, and able to go home. (No apologies. Just ignore what you were put through.)

There were two unexpected responses I had to this. First I became a bit anxious about the idea of going home. Home, as much as I want to be home, is also (as mentioned above) where I got sicker and sicker and was tortured by the insurance system. On the other hand Portland has been where I’ve recently started to feel safe. Second, I’d given them my number so that Cigna could call me to coordinate the start of treatment in Seattle. The case manager called and left a messageā€¦ and did that ever do a number on me.

I had no idea I’d react this way, I just didn’t know this was there. But I was what someone with PTSD might call triggered. Totally overcome with anxiety and fear that completely didn’t make sense, and spent the next three days totally freaked out, having a break down and periodic sobbing. I couldn’t deal with Cigna, I just couldn’t even think about them at this point, I had to shut them out of my head. These are people that decided I should suffer and get worse. I was afraid of them. And it felt like I had to go back into the care of an abuser or something. So Vi took over arrangements. I will have to avoid them as much as possible and let her deal with them, but a couple of weeks later now and I’m still iffy about going home for this reason. I don’t trust them. I’ve developed a few responses like this. Every letter in the mailbox or phone call from an insurer now produces a fear response.

Update 5/16/2019:

So I’ve been to see a therapist, and it’s not “PTSD-like”… it turns out I have actual PTSD from this shit.