I remember attending the Durban international AIDS conference in 2000, my first. That was the one where everything was going to turn around and we were going get a handle on the epidemic. Nelson Mandela spoke at that one, in a hall that was the size of three football fields. And the crowd was joyous, raucous, the noise was deafening and it was one of the most memorable days of my life.
Before Mandela took the stage, a choir made up of kids—none more than 9 or 10 years of age and many much younger—took the stage to sing tribute to the great man and those of us gathering there.
It was charming and sweet. Everyone had a huge grin on their faces. And then I realized that this group of kids was special, maybe overheard someone nearby or perhaps the MC say that this, “was THAT group.” All were infected with the virus, and as I watched these gorgeous children singing so strong, moving and smiling and clapping with everyone, I knew, knew inside, that they probably wouldn’t live much longer.
We are indeed a far cry from where we were then. And yet with all of our incredible advances, we see essential challenges in starker relief. What we’re discovering is just how hampered we remain in delivering care to those who need it most. It’s not that we don’t know how to deliver life-saving care to adults and children. The problem is that the health systems in many places still struggle to offer basic services. Our focus moving forward must be on strengthening health systems to decentralize to the most local unit, integrate with other key clinical services and ensure that programs are sustained.
A FUTURE FOR HIV POSITIVE CHILDREN
When I was in medical school, the reason why I chose pediatrics was because kids get better for the most part. There are tragic exceptions, of course, but most kids bounce back from illness and recover. They get to be kids. They grow up to be adults.
That’s not the case with pediatric HIV, or at least it hasn’t always been so. At each point in the cascade of care for infected children, there are barriers that until very recently were not really being talked about, and still are not being fully addressed.
Through my work at MSH, I became involved in the Interagency Task Team for the Prevention of Mother to Child Transmission, co-sponsored by UNICEF and WHO, and focused on advocating for improved HIV responses for children. About a year ago, I was asked to co-chair the Child Survival Working Group within the IATT—a group made up of nearly 60 professionals representing nearly 30 organizations all dedicated to thinking about pediatric HIV issues. When I took over as co-chair, I asked the members for ideas on creating something lasting, something that can highlight what we should be thinking about improving HIV care for children.
STRENGTHENING THE HEALTH SYSTEM AT ALL LEVELS FOR ALL AGES
We all agreed: the existing primary response to pediatric HIV has been to further strengthen Prevention of Mother to Child Transmission (PMTCT) programming. But in truth, a lot of kids are missed by PMTCT. Even with an absolutely perfect PMTCT system that captures every infected mother presenting for ante-natal care, there will still be a sizable proportion of women who never make it in to antenatal care, are never seen by a nurse or midwife, or a doctor during their pregnancy. They never get a chance to be tested for HIV during pregnancy and understand their HIV status—and their children will never have a chance to be protected from acquisition of the virus from their mothers. Thus hundreds of thousands of children continue to be born with HIV because PMTCT is predicated on women actually showing up at an antenatal care clinic and getting tested.
Our thought was to write a series of papers addressing all aspects of the care cascade for children born infected or affected by HIV. We wanted to highlight areas that have not received the type of attention needed—including case finding of infected children, linking these children to care and treatment, retaining them in care, ensuring adherence to medicine and addressing the myriad issues these children face.
Through our collection of essays, we show among other things, that the infrastructure and the health systems that are responsible for caring for kids are really suffering as well. It comes right down to health systems strengthening, not only for adults but also for pediatric care systems which are separate from those for adults and are often much less resourced.
We undertook this project to try to identify the areas that must be addressed in order to strengthen the care response across the life cycle of infected kids. This series became a reality through the generous support of UNICEF and the multiple organizations who participated in writing and reviewing this series of 11 papers, and through the financial support of the Canadian Department of Foreign Affairs, Trade and Development (DFATD).
GETTING TO AN AIDS-FREE GENERATION: ADVOCACY IN DC AND ABROAD
Advancing a health systems strengthening approach to HIV & AIDS for both adults and children requires more advocacy and education of decision makers: many current legislators were not in office for the passage and earlier reauthorization of PEPFAR; we therefore continue to educate lawmakers on the gains and the work left to be done—such as we are doing this week on December 2 in Washington, DC, at our event, Getting to an AIDS-Free Generation: Overcoming Remaining Challenges.
At the upcoming 17th International Conference on AIDS and STIs in Africa (ICASA), from December 7–11 in Cape Town, South Africa, we will continue highlighting the importance of addressing the epidemic, through capacity building and working in partnerships.
Getting to zero is only possible through:
- building strong health systems
- responding to the evolution of the epidemic
- building local capacity
In honor of World AIDS Day and its theme of HIV and adolescents, the makers of Inside Story, have made the film available to watch online for free on their website, starting December 1. Inside Story is a powerful film about an HIV-infected soccer player in South Africa (and a film for which I was honored to serve as technical director). Please join us in viewing the film and sharing it with others.