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How Do We Make A Better World For Children Affected By HIV/AIDS?

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By Nicci Stein

When you think about HIV prevention and children, the first thing that comes to mind is perinatal/vertical transmission -- a baby acquiring HIV in utero, through the birth process or through breastfeeding. For some reason, the catchy acronym "PMTCT" (Prevention of Mother to Child Transmission) stubbornly stays in our lexicon even though it is archaic and places the burden of guilt for transmission onto women living with HIV. But that's another topic for another day.

How HIV affects children and how the impacts can be addressed and mitigated involves so much more than ensuring babies born to HIV+ moms can be "HIV free." It's not that I'm dismissing the enormous impact of the world's most successful HIV prevention program -- far from it. Since 2011, new infections in children have reduced by a massive 60 per cent -- this drop is responsible for most of the impressive decline in HIV infections globally. Of course this is to be celebrated by everyone -- most especially by HIV+ moms themselves. I think it is safe to say that no woman actually wants their baby to born with HIV.

It is widely acknowledged that social stigma about HIV is what hampers so many of our prevention efforts.

So why then is it hard for me to join in the spontaneous applause that tend to break out at events where statements such as "... and her baby was born HIV-free" or "... and my baby is healthy" are made? I keep thinking about what that says about mothers who did give birth to HIV+ babies. Have they somehow "failed" in their parental duties? Do they feel they have to explain their circumstances to justify that it wasn't their "fault" so that the rest of us can "understand" their "failure?"

It is widely acknowledged that social stigma about HIV is what hampers so many of our prevention efforts. Stigma manifests both in the outside environment and in the self-reflections of those living with HIV and, most disturbingly, sometimes in our very own HIV community. Every day we come across situations of discrimination in our work -- sometimes based on HIV status but more often based on gender and race. Until we really tackle these issues on a massive scale, we will continue to face obstacles in our quest for global goals that make it seem as if eliminating HIV is just around the corner.

Take child apprehension for example. A staggering 41 per cent of children in the care of Toronto Children's Aid Society are black, yet only 8.2 per cent of Toronto's under-18 population is black. Parents feel overwhelmed when they come into contact with bias and systemic racism in large bureaucratic structures such as the Children's AID Society (CAS), schools and the police service. In situations where parents are struggling with issues such as poverty, under-employment and unsuitable housing, the common goal is to support them and help to strengthen the family to regain their footing and get back on track. Sometimes that happens, but all too often parents lose hope and feel frustrated. Once they express their anger and frustration, they are branded as uncooperative and everything gets so much more difficult.

Someone outside of the HIV field recently pointed out to me that they never hear about HIV any more -- except of course when a photograph of an evil "AIDS killer" graces the front of our daily newspapers when yet another black man is hauled through the court system for committing "fraud" in the context of scientifically outdated notions of what constitutes "HIV risk." It is really the behaviour of the courts that is criminal in this context -- stubbornly refusing to embrace the science that has clearly shown that "undetectable = uninfectious."

So how do we "end the epidemic by 2030" when these barriers seem so insurmountable? The global #StartStayAIDSFree movement outlines a plan to tackle the issue of HIV in children in three ways across the lifespan -- prevent new infections in infants, helping those same HIV negative children and adolescents stay that way and ensuring that children born with HIV live long and healthy lives. In each of these stages, we must work actively towards breaking down the walls of discrimination and bias as well as tackling violence directed at women and young girls before we can see any real success. While it is hard for an individual to combat structural racism in its monolithic entirety and when it seems that the expression of hatred has taken a renewed hold in our world, each one of us can work to make our own footprints lighter.

So my challenge for you this week when the world's attention is focused on HIV and AIDS, is to be mindful every day of how you go about your life -- be open and kind, really listen to what people are telling you -- not just the words, but try to imagine their experience and how it feels to be in their position, tread gently as you go through your day and end every day listing three things for which you are thankful. In this way we can honour those who we have lost to HIV and start to create a kinder and more forgiving world for those who live with HIV every day.

Nicci Stein is the Executive Director of The Teresa Group, Canada's oldest community-based charitable organization specifically serving children affected by HIV and AIDS and their families.

This blog is part of the blog series: Barometer Rising: No time to backtrack the fast track to ending HIV as a global health threat by 2030 by the Interagency Coalition on AIDS and Development (ICAD) in recognition of World AIDS Day (1 December). The series features a selection of blogs written by our member and partner organizations. Contributors share their broad range of perspectives and insight on what they think needs to be done to strengthen our HIV prevention efforts at home and abroad in order for the world to meet the ambitious target of ending AIDS as an epidemic by 2030.

Disclaimer: The views and opinions expressed in this blog series are those of the authors and do not necessarily reflect those of ICAD.

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