Simon Collins

UK

Learning to save your own life

Treatment literacy begins when a person asks the first question: What is the virus? What is the CD4 count? It continues as you ask for more information.

If you keep asking questions, eventually you get an answer you understand. Soon you can answer for yourself, your friends and your communities.

These are the politics of treatment literacy. You have a basic right to understand your body and health; choose and have access to free treatment; have information about treatment choices.

HIV has brought a radical change in how treatment and information about treatment is delivered. You begin by trusting in your doctor – but doctors have limited time and resources. Doctors speak a different language.

Who has the best interest in you having the best health? Who has the best potential to make treatment work for you?

You are the one who has the greatest interest in your staying alive.

What is the role of HIV-positive people in treatment literacy and peer advocacy? The experience of being a patient is often just as important as medical training. Patients are highly motivated. They want to live.

You get better health outcomes from greater involvement of people in their health care. In a Uganda clinic I visited, people who started treatment, who became stronger and got their health back, worked as treatment counsellors for the next group of people starting treatment. They have 99% adherence in that clinic.