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Starting HIV Therapies: Adherence Conference Excerpts, Part 1 of 3

October 1998

On May 15, 1998, Body Positive, Inc. (BP) and the Clinical Education Initiative at Mount Sinai Medical Center (MSMC) sponsored a one-day conference titled "Enhancing Adherence to HIV Therapies: A Multidisciplinary Approach." Speakers discussed current findings, and people living with HIV presented actual case studies. In the morning, Calvin Cohen, M.D. (Community Research Initiative of New England); Barron Lerner, M.D., Ph.D. (Columbia), and Jeannette Ickovics, Ph.D. (Yale) presented, respectively, the clinical, historical and behavioral overviews. In the afternoon, the conference featured three multidisciplinary and multilevel panels. They addressed adherence to HIV therapies by focusing on three pivotal stages: 1. Starting HIV Therapies; 2. Maintaining HIV Therapies; and 3. Switching Failing HIV Therapies. What follows is an excerpt from the case studies and discussion in the first panel to be published in the forthcoming conference proceedings.

In the first panel, moderated by N. Patrick Hennessey, M. D. (BP Medical Advisory Committee and New York University), Dora and Michael (not real names) presented their own case studies [these and all subsequent case studies were prepared by Marcelo Marer and Elizabeth Levine, and submitted to the participants for approval and corrections. They were based on taped interviews conducted at BP and MSMC. Nancy Margeson, HIV Clinical Education Initiative Coordinator at MSMC, also participated in the interview process].

Besides Dora and Michael, the list of participants in the first panel included Daniel Baxter, M.D.(Ryan Center); Israel Lowy, M.D. (MSMC); Kathleen Nokes, Ph.D. (CUNY), and Robert Remien, Ph.D. (Columbia).


Dora, a 37-year-old Latina, who has know her HIV status since September 30, 1993, presented the first case study. When she found out she was living with HIV, her T-cell count was 975, and at the time, viral load tests were not available. In her most recent blood work, her T-cell count was 730 and her viral load was 17,000. Dora had never been on any HIV medications.

" ... I see a doctor in a clinic in the Upper East Side. I have been seeing her since I found out I was positive. We have a good relationship and I trust that she will make the best decisions regarding my treatment ... At the moment, because of my viral load, my doctor wants me to consider starting HIV therapy. I am not completely comfortable with the idea, because I have had liver problems, and I know that some of the new medications might affect my liver ... I think my doctor will listen to me if there is something wrong with my medications (if I start taking them). Also if I start HIV therapies, I would get a beeper. I don't know, however, what the biggest obstacles to adherence will be. I will know when I get there.

"In 1993, until six months before I got my HIV test results, I was drinking a lot. My husband was also drinking and using drugs. He died in 1995 of AIDS-related Pneumocystis Carinii Pneumonia. The fact that I found out I was positive made my recovery stronger. However, five months ago, I relapsed for the first time since 1993 due to a death in my family. I went to a detox unit ... I have been sober since ... "


After Dora, Michael, a 42-year-old white male, who has been aware of his HIV status since 1985, presented the second case study.

"I believe I have been living with HIV since 1981, when I had severe flu-like symptoms, and lost 20 pounds over a six month period. In March 1982, six months later, a doctor suggested that I might have AIDS, and ordered a CD4 count. My CD4 count at the time was below 500. In 1984, I enrolled in the Chicago arm of the Multicenter AIDS Cohort Study (MACS). Thanks to that, I have viral load and CD4 counts back to 1984.

"In 1985, I ... was officially told I was HIV-positive. My CD4 count in 1985 was above 300 ... In 1987, I moved to New York, and joined ACT UP, and Body Positive in 1988 ... From [the summer of 1993] to December 1994, I did three eight-week cycles of anabolic steroids. I gained 20 pounds, but my CD4 count (consistently above 200 for years), dropped about 50 points with each cycle, and then rebounded. However, with my last cycle, my CD4 count dropped to 71. Retrospectively, I think the anabolic steroids were a huge mistake. My viral load was consistently below 1,000 before I started with the injections, but it soared to 30,000 with the anabolic steroids ...

"In March 96 ... my CD4 count was still only 121. I was ready to start a triple combination with a protease inhibitor. I was comfortable with the idea, since that regimen would be twice a day, and did not require fasting. But then I started hearing horror stories from friends ... and decided to wait for something better ... I am not on any antiretroviral medications because I am waiting for a drug with more acceptable side effects; a drug that will work in the long-run, ten years from now.

"At this point, I think my biggest blocks to adherence would be the timing issues, and side effects. I know myself. I don't live by the clock ... Also, timing my meals would never work, either. Maybe, if I had more symptoms, I'd be motivated, but the thought of going from feeling good and taking few pills to having diarrhea, etc. and living by the clock is not appealing.

"I know my CD4 count isn't great, but it is inching back up to 200 (186), and my viral load is about 7,000 ... I have a 30% risk of progressing to AIDS in nine years, but I am comfortable with that risk. I have always felt that, except for the occasional thrush and weight loss, my illness is mostly on paper (that is, in the lab results)."


The panelists discussed the significance of Dora's long-term, positive relationship with her physician, and whether the opposite type of relationship would affect her likelihood of adherence. Research has documented that communication and trust in the doctor-patient relationship is key to the maintenance of adherence. In addition, a good doctor-patient relationship will allow the person to feel comfortable enough to let the doctor know when adherence is not occurring. It was also pointed out, however, that many doctors, all too often, become emotionally invested and tend to take it personally when patients don't take medications. Michael and Dr. Nokes raised concerns about Dora allowing her doctor to make decisions for her. Panelists believe that Dora, and all people living with HIV, should understand the facts about their illness so that shared decision making occurs between providers and patients.

Dr. Lowy suggested that instead of adherence, a "successful treatment effort'' would be more appropriate, since the goal is to develop a relationship in which the patient and provider can work together. It was also pointed out that patients often bring expectations to the relationship with their physicians: some don't want to disappoint the doctor. In that sense, the patient-doctor relationship has to mature and needs time to do so.

The panel discussed the mounting stresses being placed on the health care provider community with the advent of "managed care." Dr. Hennessey raised the possibility that restrictions to access associated with managed care will impact the patient's ability to remain adherent to therapy. Time restrictions imposed by managed care may affect that process, and ultimately hinder adherence and a "successful treatment effort."

When commenting on side effect management, panelists agreed that approaches will vary from patient to patient. It's important that the provider always forewarn the patient about potential side effects, and also advise that some side effects may abate after a few months. Dr. Baxter said that it is the doctor's job to try inform the patient about side effects in a realistic but positive light, respecting the patient's autonomy and making recommendations.

In addition, Dr. Remien recommended that patient and provider should think ahead and be proactive concerning side-effect management. They should have a plan in place before possible side effects become a reality. For example, if liver enzymes become elevated, figure out a strategy beforehand for that point of concern. Also, if a rash develops, know how to tolerate it, and where to go for help; or if the temperature is above 102, know that it indicates a major effect on the patient's system. In brief, it is important to know the major side effects of concern and to develop practical strategies to deal with them in advance.

Regarding Dora's break with sobriety, again, panelists brought up the need to be proactive. Dora and her provider need to develop strategies tailored to her circumstances without denying that substance use is part of her history. The key is to understand what triggers may affect her sobriety and which, in turn, may affect her adherent behavior. Similarly, depression may also affect adherent behavior. If the patient suffers from depression, it is vital to attend to it before therapy starts.

In most cases, starting combination therapy is not an emergency [except for Post Exposure Prophylaxis -- PEP], and may allow time for a dry run. Practicing with something that it is not a real medication helps to indicate what may trigger problems. If Dora starts taking "placebo" pills, she might be able to figure out, for example, that perhaps the midday dosage is the most difficult to remember. She might be able to do something about it before she starts taking the pills. The same applies for eating habits. If a dry run is not appropriate, a cool-off period preceding the therapy initiation is necessary. There is so much to learn about side-effects, eating habits, drug interactions, etc., that many patients often suffer from information overload.

Dr. Hennessey asked the panel to comment on Michael's statement: "If I had more symptoms, I'd be motivated." The core of the discussion was whether a person who had experienced previous or current symptomatic HIV disease is more likely to be adherent to therapy then someone who has remained clinically well. Dr. Lowy pointed out that there is a lot we just don't know. One of the problems in working out a plan of action is that we don't have absolute answers. For example, if there is no clear disease manifestation, but significant progression from a laboratory standpoint, it is difficult to "convince people" who feel well that they need to take medications, especially when these medications might make them feel sick at times. For example, if Michael doesn't believe that medications will improve his health, adherence is less likely to occur. Panelists agreed that providers should not dismiss psychological issues when assessing adherence. It's a major issue to begin thinking about initiating a therapy that is going to affect one's daily life in so many ways.

Back to the October 1998 Issue of Body Positive Magazine.

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This article was provided by Body Positive. It is a part of the publication Body Positive.
See Also
6 Reasons Why People Skip Their HIV Meds
Word on the Street: Advice on Adhering to HIV Treatment
More Personal Accounts of Staying Adherent to HIV/AIDS Medications