Observer Intervention: Elizabeth Glaser Pediatric AIDS Foundation

Intervention during the Thematic Segment on Non-Discrimination of the 31st UNAIDS Programme Coordinating Board (pdf)

The Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) considers stigma and discrimination to be a key problem facing people living with HIV – and a key obstacle to effective prevention, treatment and care.

However, it is often forgotten that children living with HIV face unique problems, including in the area of discrimination, which can negatively impact on their right to health and education, amongst other rights.

About 3.5 million children under 15 are currently living with HIV. Many don’t know they are living with the virus, or what it means, even though they may be taking medication. This is because parents and relatives often keep a child’s status hidden to protect them from stigma and discrimination. For those children who do know, understanding the complexities of living with HIV and learning to cope with them can be difficult.

Based on EGPAF’s experience, the most important thing for a child living with HIV to know is that they are never alone – particularly if they are growing up in communities where they might face discrimination.

As such, EGPAF has set up what we call “Ariel Clubs,” where boys and girls living with HIV can forge friendships with other children living with similar experiences, challenges, fears, and hopes – and do so in a safe, non-­‐judgmental environment.

They talk about how to disclose one’s HIV status to friends, adhere to treatment regimens, the proper way to take medication, and reproductive health.

The clubs provide an escape from normal life -­‐-­‐ a place where children don’t have to try to hide their HIV status from anyone.

Ultimately, the clubs teach them the most important lesson of all: that they are not alone, and that it is possible to live a happy, fruitful, and fulfilled life with HIV, despite the discrimination they face.

Although our clubs are based in sub-­‐Saharan Africa, in countries including Lesotho, Rwanda, Mozambique, South Africa, and Tanzania, where the epidemic has hit children the hardest, let us not think that discrimination does not also affect children in the global North.

Only last year, an honors student in the US was denied enrollment in a private boarding school for low-­‐income families despite the fact that he met all the necessary qualifications. The school rejected his application based on his HIV status.

The case was eventually resolved after the threat of a lawsuit – but his case and the stories we hear from children in our Ariel clubs should raise red flags for all of us that there is still much to be done to combat discrimination against children living with HIV all over the world, and deal with their unmet needs.

We’ve come a long way fighting pediatric AIDS. Thanks to years of research and advocacy on pediatric drug development, we now have a whole generation of children living with HIV who are growing and thriving, and millions more who could, with full access to treatment. It is our responsibility to now provide them not just with a future, but a future in which they can fulfill their potential without fear of discrimination.

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