HIV Treatment Education in 2002
Growing up, I always knew that I wanted to be a doctor. But by the time I finished high school, I decided that I would never be able to handle the science involved. Then in 1992 I landed a job with an AIDS organization in the Yukon Territory of Canada, and by early 1994 I was coordinating the Treatment Information Program for a PWA coalition in Montreal, Quebec. Before I knew it, I was reading immunology textbooks trying to understand HIV immune pathogenesis and attending scientific talks by the likes of Tony Fauci.
I have come to understand that the language of science and medicine developed historically in a way that placed doctors and scientists in an elite position in our society -- because nobody else could understand what they were saying, it was commonly understood that that meant they were the only ones who could understand what they were talking about. The reason that the stereotypical doctor in the white coat is intimidating is because we assume they know everything and we know nothing. Sometimes I think the white coat gets worn, like a coat of armor, to reinforce that fallacious notion.
One of the most important legacies that people living with HIV/AIDS will have left behind once this dreadful epidemic is over is the collective awakening to the fact that science does not belong only to scientists, and medicine most certainly does not belong only to doctors.
From 1995 to 2002, I was privileged to have been the Director of the Treatment Information Program (TIP) for the British Columbia Persons with AIDS Society. The mandate of BCPWA is to empower its members (who are all HIV-positive and number over 3,500) through mutual support and collective action. This mandate reflects the essence of how and why TIP has been so successful. TIP is essentially run by a team of 20, unpaid, HIV-positive people. They have varying educational backgrounds, and are of diverse genders, ethnicities, cultures, ages, and HIV risk groups.
TIP provides individualized treatment counseling over the phone and in-person; we conduct question and answer sessions with various support groups and community-based organizations; and we provide workshops that are generally known as "Treatment ABC's." These workshops occur both in Vancouver and throughout the province of British Columbia via a "traveling road-show" of peer treatment counselors, an HIV specialist doctor, and an HIV specialist nurse, each of whom speaks to their peers about HIV disease, its treatments, and related issues.
Health Canada conducted a nationwide survey in Canada a few years ago. They sought to determine what kinds of mechanisms were most useful and wanted by people both infected and affected, in terms of how they want to get their treatment information. The survey showed that, almost universally, people living with HIV want to get their treatment information from their peers and in a "direct-contact" way. In other words, although the Internet and toll-free telephone lines have important roles to play, the most significant opportunity for transmitting information and supporting PWAs in becoming empowered medically is one person at a time. Standardized information can be useful, but ultimately it is only a tool to be used in the context of a broader discussion. The best way to deliver treatment information, at least in Canada, is to recognize that people accessing both medical information and medical care are undergoing a process -- a process of empowerment, a process of becoming medically literate, and a process of taking charge of their health.
There are many debates and unknowns in the field of HIV treatments, and it is a rapidly evolving field. There are very few right answers, and even fewer right answers that are right for all the people all the time. Therefore, making an informed decision takes time and requires a variety of sources of information and perspectives. It requires a level of self-confidence that does not come from reading a fact sheet and a feeling of being empowered that cannot be attained by asking 'an expert' a question. People living with HIV/AIDS are the experts of their own bodies, and only they can make the right decisions for themselves. Doctors, staff at AIDS service organizations, treatment activists, are all really just resources that people living with HIV/AIDS can consult. They may be trained in a particular field, and they may have expertise on a particular subject. But the best decision is an informed decision, and an informed decision takes time, patience, and education.
People working in TIP, both paid and unpaid, do not claim to be experts, and we proactively tell people we don't give advice. We listen, offer suggestions of reading materials or Web sites, suggest alternatives, explain concepts (such as drug resistance), discuss what has worked and what hasn't with others, help people to see both sides of an issue, and ultimately facilitate their access to the information they need. We believe that the best way to help people maximize their health is for them to understand why they're doing what they're doing. For example, telling someone that they have to adhere at least 95 percent of the time to their antiretrovirals is going to be ineffective (since hardly anybody can for any length of time) unless the issue of drug resistance and cross-resistance is explained. Once somebody understands why adherence is important, they will be more open and motivated to adhering as much as they can. They may also decide that, because the stakes are so high, they're not ready to take HAART.
I categorize myself as a "wanna-be doctor" and I drive a lot of doctors crazy, both because I challenge them and because I encourage PWAs to challenge them too. I've received a few phone calls over the years from irate doctors who are furious that I've encouraged their patients to ask questions. In my opinion, that's a sign that I'm doing my job.
Paula Braitstein is Senior Policy Advisor on Health Promotion, British Columbia Persons With AIDS Society, Vancouver, British Columbia.
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.