Map of life expectancy at birth from Global Education Project.

Thursday, April 09, 2009

So what the heck's the matter with those people with HIV . . .

who don't take their pills? Would it seem less strange if I told you that fully half of people with high blood pressure don't take their pills at all, as opposed to 20 or 30% of people with HIV who don't manage to take them on schedule? You probably aren't deathly afraid of hypertension, but in fact, although it may lack the precise inevitability of HIV disease, it will kill you, and quite likely in a highly unpleasant way such as kidney failure or strokes.

Furthermore, the high blood pressure pills generally have only mild side effects, or none worth mentioning, for most people. You only have to take them once a day, they're small, and you don't have to be ashamed of people seeing you take them, or picking them up at the drug store. For people who are lucky enough to need only a thiazide, they are even ridiculously cheap -- less than the typical insurance co-pay. Some people need a couple of more expensive pills, such as an ACE inhibitor and a calcium channel blocker, so cost does become a little bit of an issue. If you have insurance, you might be spending $20 or $30 a month out of pocket. But doesn't that beat winding up on dialysis, or being paralyzed, or dropping dead? It does for me.

It's the same for every kind of medication. People don't use their eye drops for glaucoma, even though they are likely to go blind. They don't take beta blockers and statins after they've had heart attacks. Don't take their diabetes meds, and what's more, they keep on eating doughnuts. And so on. Maybe you're one of them. What the hell is the matter with you people? Are you irresponsible? Suicidal? Crazy? Just plain stupid?

No, unfortunately you are human. There are some standard psychological wiring issues involved here, and it's self-contradictory to call them "irrational" because rational means thinking and this is how we think. One is discounting of the future. In general, rewards or punishments that may occur in the future mean a whole lot less to us than what's happening now or is likely to happen soon. The discount is so great that the mere annoyance of having to go to the drug store and stand in line is worth more than the prospect of losing the ability to urinate in 10 or 15 years. Throw in 20 bucks and it's no contest.

Another standard psychological mechanism is denial. If you're in an unpleasant situation that you can't get out of, it's best not to think about it and worry about something else. Taking these pills every day means there's something wrong with you. Forget about it, and it goes away.

Finally, why should I necessarily believe this whole story in the first place? I feel fine. There's nothing evidently wrong with me and you're telling me to ingest powerful, unnatural chemicals that are going to mess with my natural bodily functions. That might be a good idea, and on the other hand, it might not be. I do know that taking the pills makes me feel worse. (Hypertension meds can make you pee a lot, feel dizzy when you stand up suddenly, develop a dry cough, and other annoying stuff like that.)

So maybe it's not so strange after all. Maybe people are making a "rational" decision, weighing up costs and benefits in a way that makes sense to them right now. Of course they'll probably feel differently about the whole thing when they're lying on a cot three times a week with their blood being pumped through a filter. So what can or should we do about this? We can simply say that we respect people's autonomy and they should make their own choices, or we can define this as a problem that we need to do something about. I know how most doctors feel about that question. How about you?


kathy a. said...

i'm one of those bad pill-takers; it is really hard for me to remember them. so, despite intentions, i've never regularly taken vitamins; it requires real effort to get through 10 days of antibiotics.

but now i've got HBP, and it does scare me. i'm proud of marching out and getting a geriatric weekly pill box, and taking the meds plus vits every day -- but i've only been at it for 2 weeks out of the whole rest of my life. it doesn't feel comfortable or routine yet. i keep the box on the kitchen counter so my beloved will bug me if i forget; i hate being bugged, so avoidance of that is motivating me a little better than thinking about a stroke at some point down the road, frankly.

there are some associated problems with the dx. i was advised to watch sodium, and think that is wise advice. society is not cooperative, even though a lot of people probably should watch sodium. there are shocking amounts, everywhere. this isn't comparable to the stigma of HIV or possible side-effects of treatment, but i'm feeling a sense of no longer fitting in. don't even want to think about never having a burrito again. already hurt someone's feelings by declining to share some food with killer sodium amounts.

a good friend has type I diabetes. he is very good about keeping it under control -- does his regular monitoring, takes his shots, eats what he needs to when he needs to. and he is low-key about it, but i've seen folks give him grief about taking a break from a long meeting right now, or not eating something that he really can't. i think he has been so successful, in part, because he enlisted social support among co-workers, and has declined situations that might throw him off his schedule. he's got about a 40 year head start on me when it comes to lifestyle management, too.

Cervantes said...

Well, the bugging could start to backfire -- I don't know about your interpersonal dynamic but that's one of the perverse effects this whole thing can have. I may talk about that actually . . .

As for the sodium rich food environment, that is indeed a problem, although of a different category.

kathy a. said...

you are right about bugging backfiring. it is actually a huge issue for me -- i know for sure that any lasting changes are going to need to be my own choices, and i am unreasonably oppositional when family members try to impose their choices about my health on me. for the pills, i decided that keeping my pillbox in the open would be the best choice. for me.

another big lifestyle change that i need to make is more exercise. both my beloved and a sib or few have leaned on me about that, even before the HBP diagnosis, and that pushes my buttons badly. everyone has been instructed to leave me the hell alone while i work this out for myself. no, i am not going to start by marching up the long and steep hill with the dogs, because i can't do it and don't want to right now. thanks for the pedometer, but no, i am not going to do daily checkins about step counts -- and no, i do not want you to choose "appropriate footwear" for me.

the bottom line for me is that i have to own what i need to do. that is not happening overnight.

sorry for the digression about a different problem than HIV management. i'm struggling to come to grips with a completely different chronic condition, but my suspicion is that most humans dealing with chronic stuff need to come to grips, to work out what works for them. having different needs from other people isn't easy. getting a list of directives from other people isn't necessarily helpful, either.

roger said...

i've been taking 2 pills/day for almost 2 years for hbp. it took me several months to get a habit going. now i take my meds at 8am, but sometimes the day slides on till 9 or 9:30 before i remember to dose myself. good thing for me that the treatment regimen has some slack.

i can easily see the difficulty of a very strict time-dependent pill schedule. i'd need an alarm watch.

too much sodium in everything? oh yeah!!