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Psychological Issues and HIV:
Dealing with the Uncertainty of Changing Treatment Strategies

Community Forum Summary

March 2001

Speakers: Robert H. Remien, Ph.D., New York State Psychiatric Institute
Michael Shernoff, M.S.W., Private Practice

I have been attending HIV treatment forums at St. Vincent's for over two years, and have found them extremely useful for learning about various aspects of HIV disease. The forum on March 7 was unique, however, because it was the first that moved me to tears. The topic was psychological issues in HIV, and I found it very difficult to acknowledge the many uncertainties that still exist in HIV treatment and to hear the frustrations and anxieties of people living with HIV expressed so clearly. It was an emotionally overwhelming evening.

People came out for the forum because there is increasing concern about psychological issues, especially now that many people with HIV are medically stable. The speakers did a great job of encouraging audience members to share their ideas and concerns so that the evening would be a dialog instead of a lecture.

Robert Remien and Michael Shernoff began the evening by offering a brief history of the PWA self-empowerment movement. Mr. Shernoff read excerpts from the Denver Principles, a statement which was prepared by a small group of PWAs from throughout the United States in 1983 during the Second National AIDS Conference in Denver. The Denver Principles are just as relevant today as when they were created:

"We condemn attempts to label us as 'victims,' a term which implies defeat, and we are only occasionally 'patients,' a term which implies passivity, helplessness, and dependence upon the care of others. We are 'People with AIDS.'"

"People with AIDS have the right:
  • To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.
  • To die -- and to LIVE -- in dignity."

Dr. Remien described a research study that he performed in the late 1980s and early 1990s to characterize long-term HIV survivors. Even before combination antiretroviral therapy was available, there were people who were surviving HIV, of course. Dr. Remien and his colleagues were able to pin down some common characteristics of these survivors. These characteristics, discussed in the 1994 book, Good Doctors, Good Patients: Partners in HIV Treatment, by Judith Rabkin, PhD, MPH, Robert Remien, PhD, and Christopher Wilson, PhD, MPH, are still important today.

A "good" patient (for lack of a better word) is proactive and involved in his or her health care. He or she:

  • takes responsibility for their health and stays informed about the disease by keeping track of the most current treatment information;
  • reports all of their symptoms and is honest and open with their doctor;
  • complies with prescribed treatment and lives a healthy lifestyle;
  • lives as normal a life as possible within the limits of their health condition and feels a sense of personal worth; and
  • seeks and accepts help when they need it, has realistic expectations about the disease and expresses appreciation to their doctor.

A decade later, there is a major addition to this list. A "good" patient reports adherence problems so that they can be addressed with the doctor. Being honest about adherence allows changes to be made if they are necessary. Adherence problems are nothing to be ashamed about, especially since current treatment regimens are so burdensome. Problems with adherence (or less than perfect adherence) is the norm for most people. In a good doctor/patient relationship, adherence problems are anticipated at the outset -- or in advance -- and are addressed proactively and on an ongoing basis.

Dr. Remien also described characteristics of a good HIV doctor. When choosing a doctor, find someone who has extensive experience treating people with HIV and has an affiliation with a major hospital. A good HIV doctor should:

  • have good interpersonal skills;
  • be sensitive to the uncertainties and anxieties of living with HIV;
  • help their patients negotiate the health care system; and
  • be vigilant in providing health care and tracking your HIV disease.

Good doctors and good patients are best equipped to deal with some of the recent changes in HIV treatment recommendations. In February, the US Department of Health and Human Services released treatment guidelines with significant changes from previous years. It is now recommended that people without symptoms consider starting HIV treatment when CD4 cell count reaches 350 (it was 500 in previous versions) or viral load is above 30,000 copies by the bDNA test or 55,000 copies by the PCR test (it was 10,000 and 20,000 copies, respectively, in previous versions). What didn't change is that anyone with AIDS, symptoms of HIV infection, or a CD4 count less than 200 should start treatment.

These changes introduce uncertainty for people living with HIV. Individuals who started treatment when their numbers were higher wonder if they can stop or whether they made a mistake by starting treatment when their CD4 count was higher than the revised recommendation of 350. Those who haven't started treatment may wonder if they should keep waiting -- what if the recommendations change again? Doctors who treat people with HIV do the best they can with available information. Everyone feels frustration and anxiety when new information shows that an accepted standard of care is not the best approach. For example, when HAART (highly active antiretroviral therapy) was introduced in 1995, many HIV-infected people started treatment immediately with the hope of eradicating the virus. Their doctors were hopeful and enthusiastic and just glad to be able to do something to reverse the epidemic. People who refused treatment felt extreme isolation because they weren't willing to join in. Five years later, we have an understanding of some of the potentially dangerous long-term side effects of HAART and we know that there is no absolute treatment choice that works for everyone. It is normal to feel overwhelmed, and even depressed, by the uncertainty surrounding treatment decisions, especially since the information keeps changing.

A good doctor whom you trust is one of your best allies in treatment decisions. Mr. Shernoff offered some advice on choosing an HIV specialist. He recommends asking a lot of questions at an initial meeting with a potential doctor. One of these questions should be, "What's your philosophy on treating HIV?" Does that doctor's philosophy match your own? Also, observe how the doctor responds to being asked questions. If he blows you off or gets very nervous, you may be better off seeking care from someone else. Finally, Mr. Shernoff warned not to accept an antiretroviral prescription during your first interaction with a doctor, and to consider finding care elsewhere if a provider tries to push antiretrovirals. You need time to consider your options and to get comfortable with the idea of therapy before starting treatment. A good doctor will give you that time.

Throughout the presentations by Dr. Remien and Mr. Shernoff, there were questions and comments from the audience. One man stated that he always feels bad that he is alive while so many of his friends are dead, and that he cannot shake his feelings of guilt. The speakers stated that he should focus on the fact that his friends would be happy that he is alive even though they are not. Another audience member asked the speakers if they have observed post-traumatic stress disorder in their patients who were very sick, started antiretrovirals, and are now in good health. The speakers confirmed that post-traumatic stress disorder is a major concern.

An audience member closed the forum by asking how he and others in the audience could address the uncertainties in their lives and take productive steps to improve their psychological health. Dr. Remien and Mr. Shernoff responded that anyone living with HIV should consider every aspect of his or her life and think of himself or herself as a whole person, not a person defined by HIV. They also recommend accessing support in whatever form is most useful -- friends, family, support groups, counseling, doctors -- to tackle uncertainty head on. They recommended treating other conditions, like depression or substance abuse, which hinder overall health. Finally, they stressed the importance of finding balance in life and living as full and normal a life as possible.

This article was provided by AIDS Community Research Initiative of America. Visit ACRIA's website to find out more about their activities, publications and services.
See Also
10 Things You Can Do to Enhance Your Emotional Well-Being
More Advice on Coping With HIV/AIDS