Documenting pediatric HIV treatment in Africa
The latest in a series of vignettes by students documenting the work of BvLF partners as part of the Hine Fellowships project, a collaboration between BvLF and the Lewis Hine Documentary Initiative. Sarah Leeper is working with the Children's Rights Centre in Durban.
Please note that reports from Hine Fellows published on this website constitute their own personal impressions and in no way represent the official positions of their host organisation, the Bernard van Leer Foundation or the Lewis Hine Documentary Initiative.
One of the most valuable parts of this fellowship for me has been the flexibility it extends to fellows to do interdisciplinary work in various fields that can inform and support our documentary projects.
A year ago I became involved with McCord hospital, a state-subsidized semi-private paediatric antiretroviral treatment site in suburban Durban. In addition to founding a playgroup for patients on Mondays and Wednesdays as part of my work at the CRC, I volunteered to help with a research study the program was undertaking.
Nearly 10 months of evenings, weekends, and holidays later, our paper is ready for publication. If and when "Preliminary Outcomes of a Paediatric Antiretroviral Cohort in KwaZulu Natal, South Africa" appears in a scientific journal, it will become only the fourth paper in published literature to describe how children are treated with HAART in all of Africa.
None of these papers document more than 100 children on treatment. This number pales in comparison to the amount of studies published on paediatric HAART programs in the Western world, a discrepancy which becomes truly alarming when viewed in light of paediatric infection rates in SubSaharan Africa.
Number of children living with HIV in America: 9,300. In Sub-Saharan Africa: 3 million. The Sub-Saharan Africa number would easily be in the tens of millions if the children born with HIV here weren't dying at such an accelerated rate (estimated at 80% by the age of 3).
This work has given me a chance to increase my clinical knowledge of paediatric HIV infection and management and make valuable connections with clinicians and patients, all of which has informed my documentary work on treatment literacy.
Additionally, it has given me a chance to reflect on the nature of scientific study as documentation, and the need for amplifying the voices of underserved populations within scientific communities.
At a PEPFAR conference last year, I stood up and asked a pharmaceutical representative about progress on developing fixed-dose combinations of anti-retroviral medications for paediatric use. Fixed-dose combinations, or "FDC's", are combinations of different medications in a single capsule. Instead of 12 pills a day, the patient must take 1 or 2, an advance which has been attributed to increased adherence rates in communities where they're available.
However, paediatric formulations do not exist. The representative gave what I imagine sounded like a reasonable answer to him: "There really isn't a market for them."
A Doctors Without Borders poster displays a similar complaint. A young doctor (an acquaintance from my time spent in Khayelitsha) stares out from behind these words: "The TB drugs I'm prescribing were invented before I was born. And the only thing that has changed in TB diagnosis over the past 120 years is the level of the doctor's frustration." At the bottom of the page, we are informed that TB incidence rates in Khayelitsha are approximately 1112/100,000 per year.
In Lusikisiki, a small town on the Eastern Cape, HIV-positive patient support groups have formed a choir and recorded a CD. One of the catchiest songs lists (in Xhosa) all the different types of TB that a microscope cannot detect - TB meningitis, TB of the eye - and for which other diagnostic methods are not available. It is disconcerting to find oneself singing this song in the shower.
I arrived here as a documentarian with the intention of using photography within communities to amplify the voices of the underrepresented, the underserved. The longer I spend here, the more I become convinced of the necessity to find methodologies that allow these communities to be heard not just by the general population of the western world, but specifically within scientific circles.
Having spent a good deal of time around medical professionals in South Africa and in America, I am wary of the difficulties of introducing such a "soft science" as photography and narration to such formulaic minds, but I believe we as documentarians owe it to the populations we work with, somehow, to try.