Personal Perspective: I Read Somewhere ...
When I was first diagnosed, I remember coming across a survey of long-term HIV/AIDS survivors in the reams of materials I read. It said that, in addition to having good attitudes and support and things like that, long-term survivors tended to be people who "took charge of their health." They took an active interest in their condition and learned about the various treatments. Survivors regarded themselves as captains of their healthcare teams, or some metaphor like that, and saw their physicians as members of the team.
It made sense to me that taking responsibility for my health would improve it. The thing I didn't understand then was that doing what's required to be a long-term survivor amounts to a part-time job. Take charge of your health! means learning about HIV and what the best options are to stay well. The best way to do that, I found, is to conduct a lot of research, ask a lot of questions, and then conduct more research. It became clear that I had to create a system to navigate through "what we know about HIV/AIDS today" or say goodbye to free time, if not my sanity.
So I read whatever I could get my hands on, and I didn't do it with a particularly discriminating eye. I was one of the legions who said, "I read somewhere ..." without taking note of who or what that 'somewhere' was. I think I was panicked about my diagnosis, which made it hard to be discerning. I remember asking for some obscure lab tests because "I read somewhere ..." that a particular lab value was important, not because I understood why it was important or how it would affect my treatment decisions.
Now I know better. I look at the source. I take note of who funded the research. I find out what people who are knowledgeable have to say about the issue, especially if it doesn't make sense to me or I don't know much about it. I don't let my desire for something to be true (or not) interfere with my assessment of the information.
I do a better job these days of separating "this is scientifically interesting" from "this is relevant to my life." When I first started attending research conferences, I felt as though I were listening to a bunch of really smart kids talk about their experiments at the science fair. The findings sounded impressive enough, but I didn't know what to do with most of them. Maybe it's important, for example, to know that certain brain cells may continue to deteriorate even when HIV is controlled by antiretrovirals, but that information doesn't change the fact that I have to take antiretrovirals to control HIV and strengthen my immune system.
I find it helpful to stay a little detached from the data with a sort of "we'll see" approach. In HIV research, it's not uncommon for last year's Big New Truth to become this year's It Doesn't Matter. I understand better now that there's an essential nature to treatment information -- it's flawed. Research is a perpetual process of piecing together imperfectly obtained bits of data in an attempt to create a more complete picture. Sometimes things become more confusing before they become clearer.
To complicate the picture further, the most carefully conducted research tells us nothing about what doesn't get studied. Our desire for research of herbal remedies may never be met, for example, because they aren't attractive compounds to study -- scientifically or financially. If I can grow garlic and you can grow garlic, we can both advertise it as the best garlic in the world. However, if I create Norvir (ritonavir) in my lab and I own the rights to it, you have to come to me for it. Plus, I can make every batch exactly the same and prove that everyone is getting just what my ads say they're getting.
As a treatment educator, I've come to love questions that start with, "I know a guy ..." as in "I know a guy who takes aloe every day and has a really low viral load, even though he doesn't take HIV medications. Why?" This kind of question allows me to talk about how hard it is to learn anything from one person's experience -- how do we know that this guy wouldn't be doing just fine without aloe, for example? It also shows us the double-edged nature of anecdotal experience. It might be helpful to know what happened to you or me so that we can appreciate the variety or similarity of our experiences, but it can be dangerous to assume that what happened to you will happen to me without looking at all of the other things that make your experience yours and mine, mine.
I recently asked a group of case managers about their treatment information sources. They listed several, including their clients. When I asked how they knew the information was accurate and balanced, they mumbled things like "that organization seems responsible" and "he keeps up on things." They were accepting information as truth without verifying it. I knew from unfortunate personal experience that this is a problem.
I once gave a new patient in the clinic where I work a drug fact sheet from a very reputable national treatment organization and later found incorrect information on it. The patient was very concerned about a reported side effect that, it turned out, doesn't even occur with that particular drug. I stopped using fact sheets from that organization because unreliable treatment information is not useful information and can be damaging. This incident threatened to undermine the patient's trust in community treatment information and the physician's faith in my choices. Next month's corrections of this month's information aren't of much use to those of us who need reliable information right now.
If it's possible to approach treatment information in some perfect manner, I don't know what it is. I know The World's Best Resource may be out there, but it isn't useful if it's too complicated or too densely written for the person reading it. There are some that I love personally, but I don't often recommend them because they're too difficult for many people to stumble through on their own. If the goal is to learn, then I think it's important to start with information that's written in a way that appeals to the person reading it. It's up to that person, then, to check it out further with people who can give it a critical assessment.
With limits on my time and brain capacity, I often try to focus on questions that are relevant to my life. If I'm looking for a better antiretroviral regimen and I read somewhere that 95% of participants in a study got significant viral suppression on a particular combination and felt great while they were doing it, I'll look at the actual study to find out more. What were the viral loads of the participants when they started, for example? Had they been on treatment before? How advanced was their HIV disease? Were any of the participants women? In other words, were they like me? The answers to questions like these are what ultimately determine whether the information is useful for me.
Being clear about the questions can be as important as the search for answers. A veteran treatment advocate once said to me when I was lamenting that I didn't have the science background I thought necessary to make sense of the research, "Are you kidding? You've got the best tool in the world -- you live with HIV! Is the information relevant to your life? Does it make sense to you from the perspective of your own experience?"
Some people make healthcare decisions by letting their physicians make those decisions for them. Then there are those of us who want to be a part of the decisions we have to live by after we leave the doctor's office. For us, there's a confusing landscape of information to navigate, and it can seem daunting.
Fortunately, the way to take charge of your health! is really the same as it is for, well, just about everything:
Heidi M. Nass is an HIV-positive community advocate based in Madison, Wisconsin.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.