Doesn't that seem crazy?
That man is me, and I may be crazy, but the drugs themselves have given me the only HIV-related illnesses I have experienced. Why are we heavily treating people like me? Why? It's like using the atomic bomb on a village of 20 pygmies (my apologies to all pygmies). Over and over and over, day after day, decimating the same little village, the same little pygmies. We need to -- I need to -- save that firepower for something a little bigger, I think.
To be clear, when I started on HAART two and a half years ago, I had T-cells in the high 400s and a viral load that was rather detectable, in the 70,000 range. I started on a protease-based combination when I saw my numbers initially begin to change, from a stable T-cell count that had been numbering in the 700s and a stable viral load which had been happily hovering around the 10,000 mark. My numbers changed dramatically for the good, right away, as soon as I started the cocktail, and my counts continue to hold strong despite way less than perfect compliance. Way less than perfect.
Never, never, never once since I began drugs has anyone ever indicated that I may be able to take a breather. Ever. When I began my regimen I asked my doctor if this meant that I'd be popping pills forever, every single day, in some shape or form, for the many years I am planning on being here. Forever? He said yes.
But isn't that a ridiculous, completely impossible notion? And especially now, seeing the horrible things the drugs are in fact doing to people -- the drugs, not the HIV, but the drugs used to "treat" HIV -- AIDS wards treating "drug complications" and "adverse events," people with heart attacks, pickled livers, bad kidneys, anemia, "deadly rashes," lipodystrophy, permanently crippling neuropathy. Is the risk less than the benefit for someone with scads of T-cells and a few whimpy viruses?
I have felt like shit for the last two and a half years. Nauseous and bloated and gassy and urpy and poopy and tired and headachy and cranky . . . no, those ain't necessarily my normal states. Why am I making my life so exceedingly difficult, ball-and-chained to decidedly non-recreational drugs when I am basically healthy? Why am I not saving these drugs for when they will do me the most good, when the risk of nasty side effects is actually less than the benefits I will obtain? Why am I on state aid to receive these drugs? (I couldn't possibly pay for them after my clinical trial ended.) Because doctors and large, multinational pharmaceutical companies still actually push the agenda of "eradication" via the obsessive need to keep the viral load "undetectable." Why is that? We all know eradication is a fallacy, a very bad joke, so why, are we still telling it over and over and over in the hopes it will be funny? Well, there is a lot of money to be made. My simple little regimen of 18 pills per day runs about $12,000 a year -- some pretty good coins.
Why are friends and family and lovers and social workers and fellow HIV-ers and everybody and their sister's cousin's childhood crush all on the bandwagon, too?
I certainly understand that the drugs have made for many miracles in many people's lives, have brought them back from the brink, have given them second and third lives. Their experience of side effects is fundamentally different from mine, they are nuisances and inconveniences to be sure, but a whole lotta nada compared to some of the terrifying, excruciating, degrading things that can and will happen to you with AIDS. There are many people who need the kind of firepower HAART offers. Won't argue with you there.
But I am not one of them, yet. Am I? So again, I ask, why am I using the big guns when I could still be playing with water pistols?
We are all obsessed with drugs. We, me included, have listened to people who whisper their stories of going off meds, or choosing not to do them period, with a particular look of pity/horror, and we, me included, try to talk them into thinking that decision through again. Drugs are the answer, after all. They whisper their stories because they are off the party line, out of the mainstream, challenging the status quo. They whisper them because they are heretical. Radical. Nuts. But that's all changing. Going off meds doesn't seem so crazy, so suicidal, anymore.
I am on a doctor-sanctioned drug holiday. Hooray! I have agreed to monitor the markers of health that are so important to everybody (i.e., T-cells and viral load). Hooray! I will dutifully give blood and have it tested, I will wisely discuss the results with my doctor. Hooray! But I am, and will be, much more hesitant, and cautious, about going back onto another cocktail, or anything at all for that matter. Hooray for care, caution, preparation! And I say this, not knowing, and without regard to, what the lab indicators will indicate. How I feel should count somewhere. It's not just a viral load game. But there are no known lab tests to determine the amount of "feeling like shit" a person has.
We need to be wary, more wary. We don't need to panic, but we need to be wary. We need to carefully sift through the hype, through the many messages out there. Competing for our affection. Enticing us, wooing us. We need to be forever mindful that the drug companies are mighty. They do indeed have a lot of control and influence, too much, over research and our physicians -- we need to understand that. It's not just their slick ads we need to question. We need to be clear of the role these pharmaceutical giants play when our doc advocates a toxic toxic toxic cocktail the very day we test positive. It's all part of the combination. We need to be clear that a "cure" will mess up this money making machine. We need to be clear that reducing consumption of their luxury-priced goods is not good for business.
I definitely think the meds have their place and time, and have the potential for great benefit. But there are forces who are very powerful and persuasive who want us to make the place for meds "here" and the time "now and forever." "Hit hard, hit early, never stop hitting." It is big business. And it is the message that continues to rule the day, glossily, breezily, rampantly, though I believe it is beginning to lose ground. And that makes me hopeful.
To read more of Jim Pickett's columns, click here.