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Personal Perspective

One Year on Therapy and Counting ... Doses Taken: 1,460; Doses Missed: 0

In My First Year on Combination Antiretroviral Therapy, I Never Missed a Single Dose. Now, Where's My Gold Star?

June 1998

I am what is referred to as a highly motivated and compliant patient. I am highly motivated to stay alive and healthy, and I know that the way to maintain my health is to comply, conscientiously and consistently, with the multidrug regimen my doctor has prescribed for me. Actually, I'm not just highly motivated, I'm also highly compliant: in my first year on therapy I didn't miss a single one of the 1,460 doses I was supposed to take. Here's how I did it.

Two years ago I had what physicians call "advanced" HIV disease, meaning that my CD4 count was below 200 and I was at high risk of developing one or more AIDS-related opportunistic infections. Today my CD4 count is 675, and my viral load is undetectably low. If someone had told me, three years ago, that I would one day be on an antiretroviral regimen that required me to take pills four times a day, some of those pills with food, some of those pills on an empty stomach, and all of those pills at fixed intervals throughout the day -- and that I would adjust to this demanding schedule without missing a single dose -- I would have told them they were crazy. Today, if someone were to tell me that it is okay to miss an occasional dose, I would tell them they are crazy.

When, in the early summer of 1996, the doctor told me I had full-blown AIDS, the diagnosis brought twelve years of denial to an abrupt end. I'd known I was HIV-positive since 1984, when I got one of the earliest ELISA tests, but I managed to push this unwelcome information into a back corner of my consciousness. There was no effective treatment for HIV infection in 1984, so I saw no point in acknowledging my seropositivity. Like many others who discovered that they were HIV-positive in the early days of the epidemic, I reasoned that admitting I had HIV would, in a sense, empower the virus to cause disease -- in the same way that believers in voodoo give it its magic.

And for twelve years I was able to tell myself that this strategy of mine was working, because I had no obvious signs or symptoms of HIV disease. I moved through life as if HIV did not affect me, as if it would not, could not, touch me. I got my degree; I got my first job; I got my first "grown-up" apartment. I fell in love. And out of love. Then, in the early summer of 1996, I developed chronic bronchitis -- which was bad enough that it eventually brought me to the emergency room. During a follow-up visit I learned my CD4 count was 170 -- low enough that I no longer simply had HIV. I had AIDS.

My doctor immediately prescribed all of the medications that were then being given to someone with advanced HIV disease. It was imperative, he told me, that I begin prophylaxis for PCP. He insisted that I get a flu shot. And he told me that it was time -- past time -- for me to begin antiretroviral therapy. To soften the blow, he told me about the good news that had just come out of the 11th World AIDS Conference in Vancouver, British Columbia. The good news was about a new class of drugs called protease inhibitors. These drugs were working miracles for people like me, he said.

I sat stunned and speechless. Although I'd had twelve years to prepare myself for this moment, I found that I was utterly unready for it. And, as I soon discovered, I was woefully ill-equipped to make decisions about my own health care. Worse still, even though I'd known for more than a decade that I had HIV, even though I knew that I would eventually get AIDS, I had no health insurance. I excused myself from the doctor's office, made an appointment with the hospital's AIDS clinic, went home, and cried.

Having lived in New York City since the beginning of the AIDS crisis, I had seen firsthand the pain and frustration of people living with, and dying of, HIV. I had heard all the horror stories, and I had heard the repeated refrain "The treatment is worse than the disease." So I was decidedly unenthusiastic about beginning any kind of antiretroviral regimen. Even though the press was very enthusiastic about the protease inhibitors, I remained suspicious. The long-term survivors I knew endorsed holistic healing, saying it had helped keep them alive. By contrast, most of my friends who'd taken nucleoside analogs in the early days of antiretroviral monotherapy were now dead.

Most people with HIV have gone through this same process. And most of us have come through it in much the way I did: we recognize that our apprehensions about antiretroviral therapy are irrational. For me, beginning antiretroviral therapy meant admitting, finally, that I was HIV-positive. That's what made it such a hurdle. I saw it as the first step of what, I was sure, would be my final steps -- and so my drugs sat on a shelf of my medicine cabinet for weeks before I could bring myself to begin taking them.

I wasn't ready to begin what I thought of as the end game. And given that I couldn't even manage to take vitamins on a regular basis, I legitimately wondered how I could possibly comply with the rigorous dosing schedule imposed by combination therapy, a schedule that I would probably have to be on for the rest of my life.

My ambivalence about starting antiretroviral therapy lasted until I got the results of my first viral-load test: a sky-high 4.5 million copies per milliliter of blood. My doctor made it clear to me that if I didn't get my viral load under control, I would rapidly develop AIDS. There was no time left for soul-searching. I was in crisis, and immediate intervention was required. So I began my first cocktail: AZT, 3TC, and the hard-gel formulation of saquinavir (Invirase®).

As I began to educate myself about HIV and treatment, I encountered the same advice over and over again: If you want to retard, and possibly even prevent, the emergence of drug-resistant strains of HIV, you have to remain completely compliant with your drug regimen. (For an explanation of what drug resistance is, how it develops, and what you can do to prevent it, see the schematic color diagrams and accompanying text in the special Pull Out and Save section in this issue.) From what I read, it appeared that drug regimens do sometimes fail, but what more often happens is that we fail these drug regimens.

"The thought of missing a dose fills me with such dread that I would much rather interrupt whatever I am doing than risk missing a dose. On the rare occasions when I leave home without the medications I will be needing while I am gone, I turn around and go back for those pills -- even if it means that I'll be late for my appointments. After all, I can make excuses to clients for my tardiness, but HIV does not accept excuses."

In theory, at least, if I stick to my assigned regimen, drug resistance will never have the chance to emerge, and I can keep HIV at bay indefinitely. That is what my doctor tells me. That's the theory. And so, armed with this hope, I have learned to incorporate my drug regimen into my daily life. And I am proud to report that in my first full year on therapy I never missed a single dose.

I have achieved this track record for one simple reason: fear is a very powerful motivator. The thought of missing a dose fills me with such dread that I would much rather interrupt whatever I am doing to swallow a handful of pills than risk missing a dose. On the rare occasions when I leave home without the medications I will be needing while I am gone, I turn around and go back for those pills -- even if it means that I'll be late for my appointments. After all, I can make excuses to clients for my tardiness, but HIV does not accept excuses.

Having said that, I should also say that after a year on therapy I never forget my pills anymore. Grabbing the pill bottle that contains my meds for the day is as second nature to me now as grabbing my wallet and keys when I leave my apartment. But getting to this point hasn't been easy, and I've had to learn some tricks along the way.

For the first few months I was on therapy, I didn't count out my medications a week in advance; I just took them from the prescription bottles as I needed them. This worked well enough -- until I began to forget whether or not I had taken a dose. The act of opening the bottles and popping the pills became so automatic that twenty minutes later I couldn't be absolutely certain that I'd actually taken all of my meds. To be doubly sure, I'd have to dump out my medications and count all of the pills remaining in each of the bottles.

This didn't happen all that often, so for a while I put up with it. Then one day I caught myself as I was about to take my morning meds for the second time in an hour...and I realized that I needed to devise a better method of managing the volume of pills I had to take each day.

"To help me stay on my assigned regimen, I asked my pharmacist for fourteen empty prescription bottles. Every Sunday night I count out the next week's medications into those fourteen bottles, two bottles for each day, and store them in my refrigerator. When it's time for me to take my meds, I just open the refrigerator and grab a bottle."

My current regimen is ddI, d4T, ritonavir, and the soft-gel-capsule formulation of saquinavir. (Or, if you prefer brand names, it's Videx®, Zerit®, Norvir®, and Fortovase®.) I take each of these drugs twice a day. The Zerit, Norvir, and Fortovase can be taken together and with food, but the Videx must be taken on an empty stomach. As a result, I need to take my meds at four widely spaced dosing intervals each day.

To help me stay on my assigned regimen, I went to my pharmacist and asked him for fourteen empty prescription bottles, which he was happy to give me. And I bought one of those seven-day pill-reminder boxes. Every Sunday night I count out the next week's Zerit, Norvir, and Fortovase (and the supplemental vitamins that I take) into those fourteen bottles, two bottles for each day, and I store them in my refrigerator. Since I have to take the Videx alone, I put it into the seven-day reminder box, which I carry with me whenever I leave the house. When it's time for me to take my meds, I just open the refrigerator and grab a bottle. If I forget whether I've taken a particular dose, I just count up the bottles in the refrigerator or the compartments in the pill box -- which is much easier and far less time-consuming than counting pills. This way, I'm confident that I am adhering to my prescribed drug regimen, day in and day out.

Like practically everyone on antiretroviral therapy, I do experience some unpleasant side effects from my cocktail. But over the past year I have worked with my doctor to achieve the maximum benefit from my meds with a minimum of side effects that affect the quality of my life. Achieving that balance has taken some time, and it has not been easy, but I have persevered. I had to stop taking AZT, for example, because it made me feel so rotten. I had such terrible headaches that I actually cried out in pain -- but I kept on taking my scheduled doses until I could see my doctor, explain the problem, and get him to change my regimen.

I tried the non-nucleoside analog nevirapine (Viramune®) next, but I had an allergic reaction to that drug, as a small percentage of patients do. When I switched to my current regimen, I had to adjust my doses of Norvir to minimize the diarrhea. I seem to have the side effects under control at this point -- and I'm certainly enjoying the maximum effects of combination therapy -- but some days I feel as if I have no energy. At such times I remind myself that my goal was not zero side effects but minimal, manageable side effects -- side effects I can live with.

I was surprised to learn from my doctor that some people experience such discomfort from swallowing quantities of pills on a daily basis that they actually stop taking their meds. As a kid I used to have trouble gagging down a single aspirin, so I guess I can sympathize. But antiretrovirals are more important than aspirin, so you need to do whatever it takes to get them down. These days I can take a fistful of pills without giving it a second thought. My technique is silly, but simple: after popping three or four pills into my mouth, I take a large gulp of water and shake my head up and down so the pills swirl around in the mouthful of water. Then I throw my head back and swallow. The pills pass down my gullet as if they weren't there, as if I were just taking a gulp of water. This technique works for me 99% of the time, and I can generally manage to take all my pills and vitamins in three or four gulps.

The part of pill-taking that was hardest for me -- as it is for most people with HIV -- was learning how to time my doses throughout the day. Ideally, I should be taking each dose exactly 12 hours after the previous dose, to keep the amount of drug in my bloodstream as level as possible. Because it isn't always possible to take my drugs at precise 12-hour intervals, I asked my doctor how much flexibility I actually have with my daily dosing schedule. What he told me is that I need to take each dose within two hours of the scheduled time, and then get back on schedule with the next round of pills.

Since Videx must be taken on an empty stomach -- and all my other medications must be taken with food -- I have to remember to take my meds at four different times during the day. Furthermore, I have to time my meals so that I end up taking my Videx no less than one hour before, or two hours after, a meal. Fortunately, none of the drugs in my cocktail has a half-life as short as, say, Crixivan -- which must be taken on a very strict schedule so that the amount of that drug in the bloodstream does not drop to subtherapeutic levels.

On my doctor's advice I give myself a four-hour window for each of my four daily dosings. That is, if I take my Videx at 7:00 a.m., I arrange to take my evening dose between the hours of 5:00 p.m. and 9:00 p.m. I usually take the remainder of my cocktail at around 10:00 a.m., and I arrange to take the corresponding evening dose between 8:00 p.m. and midnight, usually with a bowl of cereal.

And so it goes, every day, day after day, dose after dose, without fail. I make sure my prescriptions are filled on time; I set aside time on Sunday to count out the pills for the week; and every time I look in my refrigerator and see those little bottles, I am reminded to take my meds. At this point pill-taking is as routine to me as eating or brushing my teeth. Those pills are doing their job -- because I am doing mine -- and my future, which only a year ago seemed very dim indeed, now seems brighter than it has at any time in the 14 years since I first tested seropositive. I am living with HIV. And I am living, quite successfully, with the dosing demands of combination therapy. I thought all the pill-taking might overwhelm me, but complying with therapy proved to be nothing more than another of life's adjustments.

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This article was provided by San Francisco General Hospital. It is a part of the publication AIDS Care.
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