Tuesday, October 17, 2006

At what cost?

H and I started talking last night about his fatigue. Seems that he's just been very, very tired recently and more so the last week or so. Most likely, his viral load is going up again...it's a very clear correlation: VL up, energy down. He's getting mentally foggier as well (also happens when VL goes up) and has a hard time remembering the conversation we were just having. He just kinda spaces out mid topic. It's hard to describe, but he's slowing down again. This happended last time his VL shot up. The rub is that his virus is resistant to nearly everything, so if it is going up rapidly (more than from 0 to 90,000 in a few months...which is fast enough for me), there's not a lot to be done, unfortuantely.

H says, "I wonder just how much money it's costing to keep me alive and if it's worth it." Last year his meds cost over $60,000 and his stays in the hospital were another $30,000 or so. One of his HIV meds costs $1,800 a month; the other two are a relative bargain, coming in at another $2,000 or so combined. And these meds are just 3 out of over a dozen he takes everyday. We estimate somewhere around $750+K in medical bills (all inclusive) for the past nine years or so.

I told him that without those meds, he wouldn't be alive today and it's been worth it for me (I didn't share my very, very mixed feelings on this topic). And he says, "Alive for what? At what cost? I feel like s4*! most of the time, my stomach's upset, I'm tired and always in pain. And the money they're spending on me could help a lot of other people." He rarely acknowledges my perspective on his situation.

He's feeling guilty that his medical bills are so high. Now, we have very, very good insurance coverage for him, so everything is covered. I tell him not to feel guilty about this...that our insurance companies have lots of money and for every person that has high bills, there are likely many, many, more (like me) that do not. But his self esteem has taken a big hit from having the "plague" and so he doesn't feel like he deserves anything at all. This is very sad. With former friends disappearing, being homebound much of the time, and focusing on his own losses and trauma somewhat obsessively makes him a pretty distressed guy right now.

He's taking antidepressants and I've been trying to get him to a psychiatrist to see about getting a new med, but I haven't been able to get him to agree and go.

So, years later, he is still alive, but at what cost? His quality of life sucks and it costs a pile of money to keep him alive. In the UK, I understand that they make cost/benefit decisions about a patient's care based on their likelihood of recovery. If someone is terminal, they don't necessarily do the heroics: Rx, procedures, and/or hospital care. (Some US HMOs do this too.)

We don't do that here...at least not our insurance plans. And I have mixed feelings about that. Of course, you want to keep your loved one alive, but at what cost to the individual, their loved ones, and the insurance companies?

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