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Through the window

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It's 3:45 in the afternoon. It has been a grueling, busy day with many prescriptions to fill and not enough help. There hasn't been enough time to really talk to anyone.

She comes to my window to pick up a prescription of nelfinavir, her protease inhibitor. She hasn't picked up any in the past two months."Have you been getting this from any other pharmacy?" I ask as non-threateningly as possible and trying not to imply any judgment. I'm not trying to trap her into a confession, but I've found this to be an easy way to begin these conversations.

"No, no, I only come here. I'm taking them just like you told me - one tablet twice a day - I actually have about half a bottle left."

I feel my fingers grip the countertop, and I try to lock my knees to keep from springing through the window and wrapping my fingers around her neck. Instead, I take a breath.

"Now, remember how I set up your medicine box when you started all this? It's actually supposed to be taken as THREE tablets THREE times a day," I say sweetly. I remember the day she started on this regimen. I remember explaining things to her - very clearly, or so I thought. I remember setting up her box and sending her out, wishing her luck and telling her to call me if she had any questions, any problems. Her baby had been fussing a little throughout the interview, but I thought she had heard me.

She laughs, slaps her forehead. "I'm such an airhead. I remember you telling me that now. It's just that nine pills a day gave me too much diarrhea, and I found that if I cut back the dose, I didn't get any diarrhea at all. It'll still work, won't it?"

Graphs are running through my head - dose-ranging studies that clearly show the drug failing when given in smaller doses than nine tablets a day. I'm thinking about the latest AIDS conference and the scary, early data on resistance showing that once one protease inhibitor fails, they probably all will.

I'm also looking ahead into her future, dreading the time when she comes to me telling me how much the HIV virus has increased and how her new protease inhibitor isn't working. I just don't want her to ask: Why didn't you tell me?

"No." I answer her. "It won't work like that."

I'm a pharmacist in a clinic in Seattle that is devoted solely to primary care of people with HIV. I've been at it for a long time, and I've watched the disease go through a dramatic change. My colleagues and I have lived through times when we didn't have much to offer beyond damage control against the virus once it had destroyed the immune system. We tried to prevent many things, but we often ended up treating one infection after another and watched helplessly as people we truly cared about wasted away, lost their vision, their memory and their control of bodily functions.

Most of us don't want to go back to those times. We see the new drugs as an amazing gift, a ticket out - a way to prevent all the bad stuff from happening. However, many of our customers haven't seen those times and have never felt any symptoms of HIV infection. They are young people like us who have never been asked to follow any regimen every day of their lives. Sometimes we don't see the cost of their compliance and how the side effects can ruin the quality of life we're hoping to extend.

We also don't see for ourselves how the schedule they follow dictates when they sleep and eat and serves as a constant reminder that they are infected and they'll probably be taking these drugs for the rest of their lives. To us, the thought of stopping these antiviral drugs because of inconvenience or side effects is unthinkable and not worth the tradeoff.

Most of those who dispense these drugs can't finish a week of a simple twice-a-day antibiotic treatment for bronchitis, but we expect our patients to take medications up to five times a day without missing a beat. The gap between those who take these drugs and those who prescribe and dispense them can widen with misunderstanding and skepticism. We just don't understand what it's like to keep to this schedule.

Compliance, - whether patients take their medications - is definitely one of the hottest issues in HIV/AIDS care and research these days.

It was a little slower the other day. I was at my window again giving out these medicines with my pompoms in high gear. I was trying to be encouraging and reassure my patients that these side effects would go away after the first two weeks.

He came to the window to unobtrusively pick up his medicine as he has many times before. I glanced at the computer and noticed that the dates he had picked up medicines had been highly sporadic over the past six months. He was at least two weeks late now. Feeling a little uncomfortable, because I hadn't had the time to know more about him in better circumstances, I eased into my questions. I had just gotten back from a conference in Washington, D.C., about adherence to these medications, and I had learned that often people do not realize when they are missing their doses.

To my questions, he responded, "You know, I went back to work recently and I was planning on leaving a bottle there for my afternoon dose, but it just has never happened because I don't really have a good place to keep it. You aren't going to tell my doctor, are you?"

I was thinking, "Of course, I'm going to tell your doctor," but then the issue really hit me. There is a natural tendency of both the health-care provider and the patient to avoid conflict in the medical relationship. If the relationship has always been comfortable and friendly, the patient unconsciously wants to appear good and please the provider. In turn, the provider wants to believe that the education he has provided was well-received and listened to and the patient is following his instructions exactly.

In this case, an honest report about the missed afternoon dose could result in both people rethinking the regimen. There are experimental regimens where most protease inhibitors could be dosed every 12 hours, eliminating the need for the afternoon dose. These dosing schemes are not well-studied, but both parties may be willing to accept the risk in situations like this.

A woman called the other day with a vague question about 1592 - a new medication available under experimental protocols. I was curious about the real reason for the phone call, so I began a series of questions to find out why this drug was being used.

It seems that the drugs she was initially taking had failed her, and she was being evaluated for a new regimen that included six new antivirals. As we were talking about the side effects and meal requirements of her new regimen, she became quiet and asked if there was a chance the new regimen would fail her as well.

Before I could answer, she said, "I was so good with the last one - I think I missed one dose in the seven months I took it. When my viral load came back at 13,000, my doctor and I talked about it at length. I told him that I was taking the medications exactly as he told me to. `Have you, really?' was all he could say." She obviously thought the doctor didn't believe her.

Her version of that conversation hit me hard. My mind raced back through conversations I've had with people, hoping I wouldn't find a similar instance where I've also said something as thoughtless.

It was again late in the day and I had been working with this new guy - one I had never seen before - and we had been talking for about 45 minutes. I had been introducing him to his new regimen, going through the schedule of how to take it, how to manage side effects, what to expect in the next few weeks.

As I was wrapping things up, gathering my educational materials, I mentioned that one of his medications had to be kept in the refrigerator. There was a long pause. He tapped his fingers nervously on the countertop. Is there something wrong? I asked.

"My roommates don't even know I'm gay, much less HIV positive. How am I going to keep them in the refrigerator?" He wasn't ready. He really wasn't ready.

My advice applies to anyone taking medication - not just those with serious problems like HIV infection. Ask lots of questions. Understand what the drugs can do and exactly how to take them. Don't leave the doctor's office until someone has answered everything you can think to ask. Don't hesitate to call if you have questions you think of later.

Then, if the time is right and you're ready for the commitment, go home and take your medicines.