First published as “The Impossible Ask” in Talkabout December 2000/January 2001. Impossibilities…should that be a question, or a statement? Perhaps both, I feel! A bit dated now, though it does capture the mentality at that time. I still dislike the terminology of the time, and despite my opinions on some issues changing over the last 17 years, there are points here that are still relevant!
If you are newly diagnosed for HIV, and have just started treating, this article will not interest you. If you have been taking antiretroviral for up to two years, it may pique your curiosity. If you have been treating since the days of AZT monotherapy, you will not only find it interesting, you will probably relate to it.
Treatment failure is a terminology I intensely dislike, almost as much as being informed that I have ‘advanced disease’, that I am not being ‘compliant’ – read ‘you are a naughty boy and should be caned’ – and that people with Lipodystrophy have ‘Buffalo Hump’. How rude is the latter! But unfortunately, treatment failure does exist, it is a problem I am currently groping with, and I can’t think of another term for it except ‘forgetfulness’ or maybe ‘I’m Over It Syndrome’. How long have you been shovelling pills down your throat for? 10 years or more, probably. How’s your viral load and CD4 count going? The big nowhere, undoubtedly! 10 years of pill taking for nothing more than year after year of the same blood results.
“Results look really good” says doctor, “ nothing to write home about but they are really stable, which is really great news.” Well I’m sorry Doc, but it’s not really good! It’s bloody frustrating. Years of fabulous promises and unbelievable adherence (don’t like that word anymore than compliance), for the absolute minimum quality of life. No, that is not an exaggeration. You can never return to full-time work. You never know when the next illness is going to strike. Energy levels that run out mid way through doing something (even during sex). Depleted libido, side-effects, more blood taken out of you than the Blood Bank could ever dream of having, living with the left-over effects of any AIDS related illness you may have had, and a total lack of knowledge on long-term side-effects. This is not a high quality of life!
My doctors pretty good, I have to say. We have talked about these issues, and he is genuinely trying to help. I know I am no longer one hundred percent compliant, like I was, say, two years ago. And at that stage I was pushing 350 plus pills per week down my throat. There are days where I just forget, even days where because of it being such a regular habit I can’t remember if I have taken the bloody things or not. But now, there are days and times when I just can’t be bothered. If I see another 8000 viral load, or another 170 CD4 count I’m going to scream. It has been like that for years now, and is the main reason that occasionally I can’t be bothered. Doc calls it ‘Pill Fatigue’, and that sounds as good as anything to me. As he says, pills and people just don’t go together. You got it right there, Doc!
Ah, but what to do? This is the major problem. A structured treatment break (Drug Holiday sounds like more fun) has been mentioned, and I have to admit I’m tempted. God, imagine getting up in the morning, or going to bed at night without having to remember pills. Imagine being able to have a few drinks, knowing that because you are pill-less, you won’t get a grumbly stomach ten minutes after getting into bed. Imagine not having to line up in the hospital pharmacy once a month. Imagine no dietary considerations, no side effects, no trying to remember on the bus in the morning whether you took the damn things or not. Imagine heaven. Tempting, isn’t it?
We’ve discussed other options as well. Counseling or a HIV psychiatrist is one way to go. I don’t really mind, as long as I don’t have counseling that involves mothering, or having to relive my childhood AGAIN! It is so irrelevant as far as recent events go. I’m thinking about that. The trouble is, of cause, that I want either a treatment change, or to go onto a trial that may at least show some results. I always thought the end point of treatment was to show a result, not just maintain minimalism. I realize that changing treatments brings us back to the old furfie of adherence, and that getting onto a trial often means being on combination therapy of some description, and not having had AIDS. Find me someone who needs therapeutic trials who hasn’t had AIDS, and I will show you a walking miracle!
Well, I’ve got this far through this article, and I haven’t given any conclusive answers yet, have I? Frankly, I don’t think I’m going to be able to, because I don’t know what they are anymore than you, or my doctor does. In my more depressive moments years ago, I used to think it would have been easier to take the way out of most of my friends, and just die. It certainly would have been a lot less lonely doing it that way, and I wouldn’t be left feeling like a (sometimes) freak. But I don’t really see that as an answer anymore. There are more battles to come, and I don’t know why all of us in this situation fight them, but I know we will. It’s the human spirit isn’t it? To quote an Olympic cliché, it’s ‘the fire within’.
And the hope of once a day dosing, with one pill!