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Starting, Switching, Stopping: Personal Perspectives on Making Treatment Decisions

by James Learned

Summer 2003

For this issue of ACRIA Update, we wanted to explore the different ways that people make decisions to start, switch, or stop antiretroviral treatment. We invited individuals to share their personal experiences and deeply appreciate the contributors' willingness to offer their stories so thoughtfully and honestly. Although a few of the pieces share some similar themes, what is most striking is how differently each individual approached the decision-making process and how very different their decisions tended to be.

As an HIV treatment educator, I work under the comfortable delusion that if people learn about HIV, the immune system, and current treatment options, they'll be better able to make informed decisions that will extend their lives and increase their quality of life. In my most optimistic moments, I believe that education is key to addressing the pervasively inequitable access to good medical care and treatment. So I try to help people better understand the relationship between CD4 counts and viral load, current treatment strategies, the individual antiretrovirals and their attendant dosing schedules and side effects, even the mistakes we've made throughout the history of the epidemic. To that end, I provide one-on-one counseling and group workshops for people with HIV, train non-medical providers to incorporate treatment considerations into the provision of social services, and help create written materials that offer information to people with HIV, hoping to help them make decisions about treatment that are right for them.

I'm certainly not alone in my belief that education leads to better personal treatment decisions. Community-based educators throughout the country work tirelessly to explain the results of recent studies, discuss strategies for self-empowerment, and try to help people better communicate with their healthcare providers. Flipping through community newsletters or visiting the websites of HIV treatment advocacy and education organizations reveals articles with such promisingly informative titles as How HIV Damages the Immune System, Keeping Your Liver Healthy, and Blood Work: A Useful Tool for Monitoring HIV.

The experiences shared in this issue of ACRIA Update make me wonder if the seemingly paradoxical adages "Knowledge is Power" and "Ignorance is Bliss" may be equally true. Some of the contributors have done everything the "right" way according to the prevailing wisdom for maximizing the likelihood of HIV treatment success -- they read everything they could get their hands on, sought out experienced doctors, developed personal treatment plans, and made decisions to start, switch, or stop therapy based on a solid base of self-education and empowerment. Others have done everything the "wrong" way -- they threw up their hands in varying degrees of denial, ignorance, intimidation and, perhaps, common sense and followed the advice of whoever spoke first or loudest. Yet if we were to separate the stories into categories of those who did things the "right" and "wrong" ways, the results in terms of treatment success and failure aren't very different. Some of the individuals who have most embraced the precepts of taking control, educating yourself, and making informed treatment decisions haven't done so well, while others who accepted the first advice to come along are doing just fine.

As a relatively knowledgeable educator, I have no easy explanation for this seeming incongruity. Except, perhaps, to return to the frustrating bottom line -- every individual is different, with very different responses to HIV and antiretroviral treatment. I see this regularly in my counseling work. How else to explain the guy who cuts his twice-a-day regimen in half to lessen the side effects, only to see his viral load remain undetectable and his CD4 count continue to rise? I dutifully explain drug resistance, trough levels, why drugs are dosed the way they are, and the possibility that he might be blowing one or more class of drugs. The part of me that wants things to make sense patiently waits to see how long it takes for him to develop resistance to his meds -- so how do I make sense of his repeated genotype results that show no resistance has developed? And what of the other guy who's strictly adherent to the same combination, struggling through the side effects, only to see his viral load rise, his CD4 count decrease, and the rapid development of resistance? Differing absorption, maybe. That would be comforting. But it's probably much more complicated than that.

As educators, when we talk about making treatment decisions, we often begin by discussing an individual's relationship with their doctor or other healthcare provider. The kind of relationship someone has with their healthcare provider is often indicative of their connection with their personal treatment decisions. We sometimes make the mistaken assumption that everyone wants -- and needs -- a truly collaborative relationship in which the patient and the healthcare provider work together to make treatment decisions. We envision a more or less equal relationship, with you being as responsible for your care as your provider is. Sounds ideal, but it may not be right, or even possible, for everyone. Some people feel far more comfortable with a provider who is directive and in complete control, telling the patient exactly what to do. You follow orders, trusting your provider completely, relying on him or her to know what's best for you. Relinquishing all control can be enormously comforting when there are so many other concerns that require you to take responsibility. And then there's a third possibility, one in which the patient is in control and makes all the decisions. The doctor is your consultant -- a consultant who can write prescriptions and order diagnostics -- but a consultant just the same. In this relationship, you have to be very well educated about available treatments and current strategies. This isn't for everyone either.

Whether we're talking about HIV or any other health condition, many of us feel most comfortable somewhere between these extremes. And our needs may change over time. The relationship with a healthcare provider that works best for any one individual is likely to be based on many factors, including culture, previous experiences with the healthcare system, and personality. As with sex or any intimate relationship, sometimes we want to feel in complete control, sometimes we want to relinquish all control, and sometimes we want the give-and-take that offers us at least the illusion of equality. The personal experiences shared by the contributors to this issue of ACRIA Update attest to the fact that different provider relationships work equally well depending on the individual. As with treatment decisions, there are no "right" answers.

The collection of personal stories included in this issue doesn't pretend to be a scientifically accurate representation of the current epidemic. Many of them describe stopping therapy, not as structured treatment interruptions in research settings, but as drug holidays taken for various reasons with or without their doctor's approval. The number of drug holidays described may at least partly be a result of self-selection -- people who have successfully stopped therapy may be more willing to share their experiences. Or it may reflect an experience that is more widespread than many people realize or want to acknowledge. Most of the contributors also have an advantage over almost everyone with whom we conduct treatment education at ACRIA -- private insurance, which generally affords patients better care and treatment than people on Medicaid. It's also important to acknowledge that some individuals who wanted to share their personal experiences chose not to for fear of reprisal if their status were revealed. They were afraid that, even if they used a pseudonym, there might be enough identifying details in their stories to threaten their jobs, their families, their relationships, and their homes. That concern may not be surprising to most of our readers, but it's an important reality check for all of us. It's critical to keep in mind that the voices represented in these pieces don't necessarily represent everyone -- or even most people -- making treatment decisions today.

The seeming contradiction between our belief in the importance of education in making informed treatment decisions and the fact that lots of people do just fine by blindly following doctors' orders or making decisions based exclusively on emotion and faith may not be as antithetical as it first appears to be. Sometimes maybe knowledge is power and ignorance is bliss. Conversely, maybe ignorance is sometimes enormously powerful and knowledge is luxuriously blissful. As we work in our communities as peers, educators, case managers, and friends, sometimes it may be best to toss aside our handy lists of questions designed to help people develop treatment strategies and prepare to start, switch, or stop therapy. Sometimes it may be best just to listen and support them on their journeys.

James Learned is Director of Treatment Education at ACRIA and Editor of ACRIA Update.

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