Agenda Item 6 – Gap Analysis on Paediatric HIV Treatment, Care and Support
Delivered by Laurel Sprague, North America NGO Delegate
In 1991, when I was pregnant and diagnosed as HIV positive, there was no choice for me and the other women I met but to hope and fear. In 1992, when my son was born, I was told that if my son was positive, he was likely to survive two miserable years, at most. Like the other positive women I knew, I experienced the painful month after month of watching and waiting to learn if he would test positive once my antibodies cleared. It is unconscionable that women and families today experience that same suffering, which is absolutely unnecessary and does not happen in wealthy countries. It is time to say that this stops now.
We ask you to always remember that women and caregivers are central to any report on paediatric HIV. The starting point is women’s access to timely and quality antenatal health care and to clear information about their HIV testing and treatment options. We must remember that no one wants better outcomes for their children than parents do.
The only way to an HIV-free generation is to ensure that paediatric infections do not occur. This is why the work to end vertical transmission led by the Global Plan and others such as PEPFAR is critically important and must continue until the work is done. It is also why intellectual property barriers, as noted in this report, must be addressed.
The section in the report on the barriers to care resulting from stigma and discrimination demonstrates how critically important anti-stigma and discrimination targets are for children. Unfortunately, very little data exist on childhood HIV stigma, including associated internalized or self-stigma and gender-based and other violence, which are well documented in adult experiences. We will call on UNAIDS to lead the efforts to remedy this evidence gap.
Let me end my remarks with a plea for GIPA for children living with and affected by HIV. I don’t know if there is a group that is more talked about and for, rather than invited to participate, than children. We call on everyone in the room to commit to the greater and more meaningful involvement of children living with HIV, those in HIV-affected families, and their parents and caregivers, in all areas of the HIV response for children.