Maintaining HIV Therapies, Adherence Conference Excerpts: Part 2 of 3

On May 15, 1998, Body Positive and the Clinical Education Initiative at Mount Sinai Medical Center sponsored a one-day conference on "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., of the Community Research Initiative of New England; Barron Lerner, M.D., Ph.D., of Columbia University; and Jeannette Ickovics, Ph.D., of Yale University presented, respectively, clinical, historical and behavioral overviews. In the afternoon, three multidisciplinary and multilevel panels addressed adherence to HIV therapies at three pivotal stages: (1) Starting HIV Therapies; (2) Maintaining HIV Therapies; and (3) Switching Failing HIV Therapies. This article is an excerpt from the case studies and discussion in the second panel to be published in the forthcoming conference proceedings.

The panel on Maintaining HIV Therapies was moderated by Michael Mullen, M.D., of the Body Positive Medical Advisory Committee and Cabrini Medical Center, and Shirley and Daniel (not their real names) presented their own cases. These and all other 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 Body Positive and Mount Sinai. Nancy Margeson, HIV Clinical Education Initiative Coordinator at Mount Sinai, also participated in the interview process. Besides Dr. Mullen, Shirley, and Daniel, participants in the second panel included Gary Kalkut, M.D., Montefiore Medical Center; Israel Lowy, M.D., Ph.D., Mount Sinai Medical Center; David Pieribone, consumer; Jane Simoni, Ph.D., Yeshiva University; and Diana Williamson, M.D., M.Sc., Harlem United and Mount Sinai Medical Center.


Shirley has known she is positive since 1995. In 1994, her three-month-old daughter was hospitalized for a week. When her daughter came down with pneumonia and whooping cough, the doctors suggested that she be tested for HIV. Shirley was afraid at first and refused, although she knew her daughter had been tested anonymously at birth. Here are some excerpts from Shirley's presentation:

"In July '95, I went to a clinic. My T-cell count at the time was 289. Viral load was not available until eight months later. My daughter's viral load was done first. When Medicaid started paying for viral load testing, I was tested. My viral load was 22,000. My daughter's viral load is currently 21,000 and has always been high. It keeps going up. Her T-cell count was 500 at the beginning, and now is 7.

"We didn't get any medications until my daughter's first illness in July '95. I started with Invirase, Epivir, and Zerit, which worked for a while. When Zerit gave me neuropathy, I stopped taking it and changed to Viramune. So my current regimen is Viramune, Epivir. and Invirase. I have never had an opportunistic infection, and I have been on this combination for the last year. The last time I had my bloodwork done, in April '98, my T-cell count was 1,400 and my viral load was undetectable.

"I take the medications at the same time as my daughter, and that helps me remember to take it.... I was trying to follow the dietary restrictions on a full or empty stomach as prescribed, but I couldn't keep it up, so I just take the medications when I am supposed to, regardless of the food requirements. When it comes to adherence, food is the biggest obstacle for me, and especially for my daughter. She leaves for school at 7:00 in the morning, and it's almost impossible to get her to eat. It is the same thing when she comes home from school: She doesn't want to eat, so I just give her the medications. At nighttime, she's supposed to eat before her medications. Occasionally we miss doses. I don't tell my doctor if I miss a dose.

"I have to take these medications to live, to stay healthy, and I don't let things interrupt that. I have to put my medications into my daily life the best way I can. When I have questions, I call my doctor at home. My daughter has been hospitalized five or six times, the last time with an upper respiratory infection....

"When I found out I was HIV-positive, I stopped smoking and didn't drink anymore. I also stopped going out. In the beginning, I joined a women's support group, but now I don't go to any support groups, because they are too depressing. My family knows about my HIV status, and I also have two friends who are living with HIV. However, I have some friends who have children and don't know our status.... My advice to positive parents who are raising positive children is to try to arrange the dosing so that you and your child are taking the medications at the same time. It's a partnership. Having a daughter who is HIV-positive was the reason why I finally agreed to take medications. I was in complete denial, until she went to zero T-cells and I realized she could die. That gave me the motivation. It was real."


Daniel is a 35-year-old white male who has known his HIV status since 1993.

"Upon diagnosis in 1993, I immediately looked for care at a major teaching hospital in New York City. My CD4 count was 840 and, at the time, viral load tests were not available. In 1996, my CD4 count had dropped to about 300, and my viral load had reached 350,000. That was the first time I had a sense of urgency.

"In '96, I enrolled in a clinical trial at a well-known research institution. My T-cells were 186, and I was taking a double protease combination of 600 mg Norvir and 400 mg Invirase. I started with only protease inhibitors because I was concerned about possible toxicity of RTIs.... Three months later, my CD4 count was 500, and viral load was under 400. My skin had improved, and I went from being anergic to close to normal. At the time, because of Norvir's side effects, I replaced it with Crixivan and dropped Invirase. I also added two RTIs, AZT and Epivir [3TC]. My new regimen, AZT plus Crixivan plus Epivir, was too strict. So I switched the protease inhibitor again, replacing Crixivan with Viracept three times a day, which could be taken with food.

"Nonetheless, when I was on Viracept three times a day, I was more prone to forget. I asked my doctor for an experimental, not-yet-FDA-approved, twice-a-day regimen of Viracept. So in late 1997 I went from Viracept 750 mg three times a day to 1250 mg twice a day. When Combivir came out, which combined AZT and Epivir into one pill, I also switched to that. Now, I take my medications twice a day, a double dosage of Viracept and Combivir. I rarely miss a dose, since I take the medications at the same time with food. The fact that I have been able to minimize the amount of pills is helpful, because the third dose was really difficult. I tried pillboxes, alarms in the house, but these things don't work for me.

"Since I started taking antiretroviral medications in 1996, I wanted to mitigate the side effects as much as possible. For example, I switched antinausea medications several times, until I settled with Marinol. In order to manage GI disturbances (I had always had a predisposition to GI problems), I take Imodium and/or Lomotil regularly. Every single drug has given me diarrhea at least once a week. (Since part of my work activities is to visit with people who had end-stage HIV disease, that motivates me to think diarrhea once a week is nothing.) However, since I started my twice-a-day regimen of Viracept, GI side effects increased, so I cut my coffee and dairy intake completely. Overall I am very strict with my diet."

"I'm not afraid of switching drugs. I also research all medications prior to taking them, go to meetings and conferences, and get help from my brother, an M.D. and researcher. I also have a doctor who lets me do what I want, and prescribes the medications I want.

"Prior to being diagnosed, I was doing AIDS activism.... When I found out about my HIV status, AIDS activism was sort of a double-edged sword. It made it more difficult, and worked as an informal support network. Actually, in the beginning, I joined a support group, but people were just too depressed. I myself have also been on antidepressants, and on private counseling on and off since 1992, before I knew I was HIV-positive.

When I found out I was HIV-positive, I started making changes in my lifestyle. I stopped drinking, smoking, and using drugs (cocaine, ecstasy, special K). Initially, I also looked for alternative therapies, became a vegetarian, did acupuncture, Chinese medicine, and started taking nutritional supplements, which I still do.

"I want to live. I'm also out about my HIV status, which helps, and have been in a relationship for the last eight years. My partner, who is HIV-negative, reminds me to take my pills and is incredibly supportive. At times, however, I feel that he is somehow insulated from my problems, but I can take any problems to my friends. Today, most of my HIV-positive friends are on antiretroviral therapies. We get together and talk about HIV."


The panelists discussed specific issues regarding pregnancy and adherence to an antiretroviral regimen, agreeing that pregnant women should take their medications during pregnancy. Regarding side effects associated with pregnancy, there is clear information only on AZT; the studies on newer drugs are not nearly as well developed, although some information suggests that a decrease in viral load might correlate with a decrease in HIV transmission. Providing information to HIV-positive pregnant women on the possible decreased risk of HIV transmission can be an effective part of an educational effort, and is often persuasive.

On food requirements for some regimens, Dr. Williamson pointed out that food needs to be discussed beforehand with most clients, especially those who can only get food at certain times of the day. Doctors should be aware that food availability could be a problem, and attempt to tailor a regimen not only around food habits, but also around food availability. In some cases, referral to pantries with flexible schedules may be necessary.

Dr. Simoni commented that there is, at the moment, no established correlation between substance abuse and adherence. Using substances is just one aspect of a person's life. It is important to assess the strenghs an individual might have. We know some factors that correlate to being unable to adhere. People who are likely to do well are men who have no history of crack use, who are not living with kids, who have a partner, and who have some social support available and limited stress -- people very unlike Shirley. Nonetheless, providers might be able to tap into cultural facts. For example, a woman who is pregnant might not think of herself as the most important thing; for her, the most important fact might be that she will have a child, and that she wants to be there for her baby. That aspect can be instrumental in motivating a pregnant woman.

Dr. Lowy added that the technical expertise that some drug users have to maintain their habit can be used to show them they might be able to take their medications even under very adverse circumstances. It's not that they cannot do it. The question is, "Can we make this important enough to them that they won't miss doses?" It needs to become something the person feels he or she needs to do and wants to do.

Dr. Williamson commented that it is also important to consider that, among drug users who are ready to stop using drugs, there might also be a readiness to start new medications. Providers need to become aware of the resilience and the strength that it takes to manage an expensive daily habit. Drug users need to get high on time without going through withdrawal. If the provider takes that parallel and shows that the behavior is good vis-à-vis adherence, the patient may change the substance and buy into new types of drugs. Instead of heroine, crack, or cocaine, we are now talking about protease inhibitors.

Dr. Mullen asked the panel to comment on prescription practices for injection drug users, since the incidence of hepatitis C among substance users who are HIV-positive is close to ninety percent. The panelists agreed that, although double protease combinations may be more injurious to the liver, the prescription practices don't change much for someone who is hepatitis C co-infected.

Finally, providers should go over the medications with the patient either before or after each visit. This can be done by a trained staff person, and not necessarily by the physician. That discussion may include side-effect management in which dietary and lifestyle changes may be suggested. Education can sometimes make people feel different about some side effects.

On the topic of missing doses, panelists emphasized the role of education. Anyone taking antiretrovirals should know about the importance of maintaining drug levels so that it becomes statistically difficult for the virus to break that barrier and bring about mutations against those drugs. Generally, consistency, rather than perfection, is what is required. If there needs to be an interruption in therapy, beyond an occasionally forgotten dose, it is better to stop everything rather than simply one or two drugs. If a patient has a problem with a particular medication, it is important to stop all medications, and not just the one that causes trouble. An immediate follow-up with the provider is advised.

Back to the November 1998 Issue of Body Positive Magazine.