Listening to those who live it
This project stems from our recognition that our best teachers about AIDS, or anything else, are those who are living it. We knew that the experiences, desires, and circumstances of positive people were not being listened to as they should be. Part of this was because those voices never reached our ears. This project was initiated to open our ears to the realities of living with HIV/AIDS in different parts of the world, particularly Asia and Africa and focuses on two pieces, Treatment Stories of Positive People and Death Stories of Positive People.
There are almost no attempts to honor, use, or share the knowledge gained by positive people in the developing world whose lives literally have depended on the choices they have been making about the care they seek from others, and their strategies for self-care. If ever there was a compelling argument for broadening our conceptions of treatment and care, these lived experiences are it.
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By collecting these stories we want to hear from people living with HIV or caring for those with HIV to help us answer some pressing questions that need to be considered when developing policies for HIV treatment and management:
- Is there a mismatch between AIDS treatment budgets and actual people's preferred treatment regimens? If so, what should we do about it?
- In what ways are our policies inclusive of a range of treatments?
- How does good ARV treatment differ according to our size, our illness, our lifestyles, or the other medicines and treatments we are taking?
- What about care for the vast majority of positive people who do not meet the protocols for ARV therapy? How can we devote conscientious attention to promoting strong immune systems, to staying healthy, rather than only treating illness?
- Is there any correlation between the length of known infection and treatment outcomes for specific therapies? Is there evidence that repeated use of some herbal medicines should be of concern?
- How, in general, is Asia different from Africa in terms of our treatment aspirations and experiences? How can we shape our delivery with this in mind? How can we learn from one another?
We want to continue this work of active listening and sharing and invite those who wish to share their stories with us using the toolkits for Treatment Stories and Death Stories provided on this website.