Listening to Those Who Live It
Treatment Stories of Positive People
Starting the Project
This project was initiated in November 2003 by a team from Kenya, India and Thailand who interviewed HIV+ people and their care providers about their personal experiences of HIV/AIDS treatment and care. We included people with a wide range of treatment experiences, including ARVs, herbal medicines, nutritional interventions and spiritual and psychosocial approaches to care. The result of this process was our publication Nine Lives - Treatment Stories of Positive People that honors the experiences, choices and health outcomes of the people we talked to. We are building on this work and continue to collect treatment stories from around the world.
Over several months we talked to more than 50 care providers, activists and positive people from Africa and Asia about their personal experiences with AIDS treatment and care. Our effort was to be inclusive, to broaden definitions of ìtreatment and careî so that they acknowledge the real lives of positive people and the lessons they have to teach us all.
Our Findings
Before we began this work, we imagined that peopleís stories would bring to our attention a wider range of options than are often considered, and we were right. This work also compelled us to take stock of a wide range of ARV experiences and of the fact that so many of us combine therapies and tailor our treatment based on culture and circumstance.
Once we started we discovered that there was little work of this kind, looking at treatment experiences, and none with our focus on Asian and African experiences. In addition to this, we immediately began to learn that there is a mismatch between the lived experiences of positive people and many global understandings and protocols for treatment and care. In many cases, there is a gulf between the treatment aspirations and living conditions of positive people in Asia and Africa and the medication and care available to them, or planned for them in the foreseeable future. There is a woeful lack of programmatic attention to the need for good nutrition, and for the promotion of health and building of strength of the immune system for people who do not yet exhibit viral loads and CD4 counts which make them eligible for anti-retroviral (ARV) therapy.
Nine Lives
We selected nine stories from our interviews and published them as a book, Nine Lives - Treatment Stories of Positive People. Of the personal treatment stories included in this initial collection, two are from Thailand, one from Uganda, two from Kenya, two from India, one from South Africa, and one from the United States. Half of them are currently on ARVs; all have been positive for several years. All speak from the heart about their trials and triumphs. All offer advice to others coping with the virus, and to care providers and policymakers charged with making decisions about treatment.