“Tuberculosis is a social disease” William Osler once stated. He was likely referring to late 19th century urban crowding and appalling working conditions. But upon visiting Snehakiran clinic I thought of how much this statement also applied to HIV care in India. This is a clinic supported by a Catholic organization devoted to patients with HIV which is located in a rural location. It was the first time we had driven beyond the city limits of Hyderabad, with the concrete jungle giving way to wide open fields. It was a different atmosphere than the city, and one in which some of the social problems behind a disease like HIV seemed to be especially pronounced.
In a simple one-story structure down a dirt road we came upon the office of our contact – a practitioner trained in both India and the States who had come back to India to treat patients in need. The stories we heard were filled with heartbreak and tragedy: a teenage girl who had run away from home where she was likely being abused by family, a boy of perhaps 8 who had lost his mother a year prior and was now living in an orphanage. He came with a fairly complex HAART regimen with which he could not possibly have been compliant. We learned that medications are shared in his institution and that any special treatment risks ostracism by his peers. This was not only problematic in terms of him receiving symptomatic meds (i.e., they could be used for other children instead of him), but demonstrated a strong social driver for non-compliance with his HAART. Indeed, he had extensive scalp folliculitis and vesicular nasal lesions suspicious for herpes. Like Western orphans of tuberculosis in the 19th century, these patients had lost their families to HIV. Who was looking after them now? Another woman whose husband had died was living with relatives, but told us they were now asking her to leave the house. This may have been for economic reasons or because of stigma. In any case, it was clear that the health of these vulnerable patients was being compromised by a lack of adequate social support.
At least at Snehakiran they seemed to have a temporary refuge. The level of compassion here was clearly evident. Their doctor, who was relaying their stories to us in English, cared enough to know both their medical and social histories in detail. And the brother (nurse) assisting him was able to provide updated details of their stories. In a country not especially known for physical contact among strangers, his arm around the patients as they sat in front of the doctor and the audience of foreign guests was truly impressive and inspiring.
Children shunned in orphanages, children ejected from schools by the worried parents of healthy children – thankfully these would only be dated and historic tales in the United States today. The government of India has a defined scheme to support healthcare in rural settings through financial and administrative support. But changing people’s mindsets and behavior may be the larger task. My hope is that in the future wider public knowledge and more effective treatment will start a positive cycle to combat stigma… and that in the meantime caregivers (in the true “caring” sense of the term) like those at Snehakiran will continue to serve those who otherwise might have no one.