Personal Perspective: The Journey
As a person living with AIDS for more than a decade and a healthcare professional, I learned early on that knowledge is power. Indeed, treatment information is the cornerstone to surviving AIDS with a high quality of life and minimal complications from both the disease and the medications we have to take.
I access HIV treatment information for the work that I do and for my own personal use. The journey involved in recognizing the best sources of treatment information hasn't been easy. However, it has paid me back with a new perception about HIV disease -- I went from the original perception that I faced a death sentence to my current hope for a long, productive life.
Nowadays it is very easy to find HIV treatment information, but I had to learn how to choose the best sources of information and exert caution on how to apply this knowledge in my personal treatment decisions as well as when I provide recommendations to others in my work. I remember the time before HAART, when we only had AZT. Treatment information seemed totally beyond my reach and understanding. HIV treatment was very intimidating, and only a few "divine" minds had the right to that information. But something happened. The people who led the treatment advocacy movement became the leaders of treatment education. In this way, I received my first training from treatment educators who were the faculty for the National Skills Building Conference in 1994. They transformed complex treatment information into information that was easy to understand and practical. It was identified as the best way to empower people living with HIV.
These treatment educators taught me some of the basics -- to pay attention to the numbers of participants in a clinical trial (the "n" of the study), time of follow-up, balance within the groups in the study, and the type of analysis used. For example, "Intent-to-Treat" is the strictest kind of analysis -- data from all patients is used, whether they completed the trial or not. "As-Treated" is more forgiving -- patients who drop out are not counted, which can make the treatment look better. They also helped me learn how to choose the best sources of information. Is the newsletter or Web site free of commercial bias, for example? Does the source of information have an editorial advisory board? Does the material present counterpoints? Was the information previously published in a peer-reviewed journal? Is the information relevant to the concerns of the HIV community?
My first source of treatment information is the Internet. For me, Web sites such as Medscape, Clinical Care Options, AIDSmeds, New Mexico AIDS InfoNet, and The Body are the best places to initiate a search. Other electronic resources offer updated research information regarding HIV treatment, complications, and opportunistic infections; some of them have interactive services where you can post specific questions and concerns.
Another way that I obtain updated treatment information is by attending national and local conferences, meetings, and symposia. The major AIDS treatment conferences are the Conference on Retroviruses and Opportunistic Infections (CROI), the Interscience Conference on Antimicrobial Agents and Chemotherapy (ICAAC), the International AIDS Society (IAS) Conference on HIV Pathogenesis and Treatment, and the International AIDS Conference. There are other, more specialized conferences including one on metabolic complications and another on resistance. I also try to attend local medical updates presented by HIV clinicians who attend the HIV conferences and present the highlights. The Web sites of some of these major medical conferences include excellent webcast programs where you can see and hear many of the presentations. The level of most of the presentations is quite complicated, and I often need to ask fellow physicians their opinions and what they got from the presentations.
After getting the "raw" version about a specific topic, I like to hear other people's perspectives about the research that's presented. The results of a research study can be interpreted in more than one way, so I need more than a single perspective to better understand the pros and cons of the results. I ask a lot of questions of other treatment educators and physicians, including my own doctor. I also check the information from AIDS newsletters that usually summarize and put together the topic from different perspectives. Personally, I prefer the newsletters that have panels of experts and those that include the input of community representatives and treatment advocates so that I can get the information from different perspectives. This way, I can form my own opinion. Among the newsletters that I constantly review are ACRIA Update, Positively Aware, NATAP Reports, Numedx, and Topics in HIV Medicine. I particularly like ACRIA Update and Positively Aware because they present complex information in easy, friendly, and concise ways so that I don't have to spend a lot of time reading.
Obtaining HIV treatment information isn't really the major challenge, though -- it's how to interpret and apply that new information in our lives. There is so much to be learned in the field of HIV treatment. I learned long ago that what works for others will not necessarily work for me. Two individuals can respond to the same treatment in very different ways, depending on factors such as genetics, age, gender, ethnicity, and others that we don't yet understand. That's why I really enjoy meetings that include panels of experts during which clinical cases are presented. Most of the time, the disagreement among the experts on how to approach the same case is the best education that you can get. In other words, what I learn from such panels is that "one size does not fit all."
Finally, whenever something new comes out about HIV treatment, I always check my resources and ask my doctor about it. The most successful treatment plan is one that I have faith in, one that fulfills my expectations, and one that doesn't interfere with my lifestyle needs. However, I recognize that this treatment plan is a result of getting the best information, from the best sources, with the best analyses and interpretations. The journey involved in gathering good treatment information is full of choices. I was taught by other people living with HIV how to make the best choices, so I truly trust resources that use the peer-to-peer model of sharing education and include the voices of the HIV community in their content.
I enjoy sharing new treatment information with other people who, like me, live with uncertainty, fear, and doubt about antiretroviral therapy. It is quite fulfilling to see the faces of friends and clients -- some of whom are native Spanish speakers with fewer information resources -- when they learn more about their treatment options and go to their doctors empowered with new knowledge. Treatment information can be extremely intimidating -- even more so when you don't speak English well. Working with monolingual Spanish-speaking communities infected and affected by HIV has made me appreciate how treatment information can change and improve people's lives.
Octavio Vallejo, M.D., M.P.H., is Community Health Program Manager at the Pacific AIDS Education and Training Center in Los Angeles. He has been living with AIDS since 1990. For the last 14 years he has worked exclusively in the field of HIV, working shoulder to shoulder with people infected and affected by HIV/AIDS.
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.