I don’t think that I could ever forget the first faces that I associated with HIV. Like anyone else from the developed world, caricatures of wasted AIDS patients in grim, third-world wards have been consistently imprinted by news reports and pictures on checkout-counter donation boxes. I think we all realize that we become desensitized, but that still doesn’t prevent it from happening.
Even if you work for a specific health cause – HIV/AIDS, TB, parasitic infection – it’s so easy to get lost amidst the statistics and programmatic pigeonholes. Attending several WHO meetings in recent years has increasingly taught me how easy it is to become removed from the same people that you are trying to help. It’s not through any diminution of altruism that this happens – exactly the opposite. Finding a niche that needs to be filled – better development of dengue diagnostic tests, for example, or campaigning for increased training for nurses – is both natural and necessary; disaggregation of a problem is the easiest way for an individual actor to make an impact. All this being said, at the heart of the tables, graphs, and logframe outlines, there is a population that is sick. And each population is made of so many individuals. People. Stories. Lives. Faces.
Until this past month, I had become increasingly uncomfortable with this disconnect in my own life. I have written extensively about “domestic violence victims” and “HIV positive wives” during my time here – but who are they? Equally important to me – and, in the pragmatic sense, to the program as they approach potential new donors – was interacting with the patients and AIDS-affected population that YRG serves. Through the kindness of my advisor, Ganesh, and the dynamic medical director at YRG’s hospital, Dr. Kumar, they agreed to let me start attending rounds, counseling sessions, and helping with outpatient care.
So I found myself, face to face, with a family of three being counseled on HIV for the first time. As the interview was in Telugu (a regional language of Andhra Pradesh), I simply watched and tried to follow the counselor Lakshmi through her interview. The family was young: the father was 32, the mother 26, and their small boy three. I played peek-a-boo with the boy as Lakshmi went through her paperwork and preliminary questions, the young couple sitting uncomfortably erect in their chairs. The boy played with the edge of a window curtain, smiling as he sat quietly in his father’s lap.
Pausing, Lakshmi turned to hand me the carefully-creased diagnostic tests that they had brought with them that morning. Medical papers in developing countries still always cause me to pause; coming from a culture where everything is digitalized, to see people’s testing strips taped to soft, well-worn papers, diagnoses scribbled by hand, is such a powerful example of an old world adapting to the new, to the extent that’s possible.
“This is a new family at our clinic,” she explained. “All three are HIV-positive.”
I tried not to let my face show emotion as I turned toward the family. I had suspected the husband, possibly the wife- but the boy? Soft morning light falling on his face, he now slept peacefully in his father’s arms. Three years old, and already limited to a shorter life and inevitable pain. I looked at the father, seeking to vilify the face that had brought his entire family so many difficulties.
But I couldn’t. His face was not the face of a malicious womanizer, nor that defiantly poignant, hardened image of a “truck driver” or “injecting drug user.” His eyes were kind, and sad, and empty; I could not begin to imagine the guilt that he had to bear as he sat in that room, calmly discussing the death sentence that he had unwittingly given to his family. I felt such sympathy for him. Yes, he had had an extramarital affair. Yes, he hadn’t practiced safe sex, and his partner had been positive. But, in a society where it’s commonly accepted for men to have side partners – was he really so much to blame? How many things have we all done that we know haven’t been “right,” but were colloquially accepted? Coupled with an arranged marriage and likely lack of health education – how much could he be blamed, and how much of his situation was simply the unlucky product of circumstance?
As the wife wiped away silent tears, I likewise felt my heart sink for her. Caring for a positive husband and child, as well as herself….So many burdens added to the burden of who she was: a poor Indian housewife.
The family agreed to undergo further compulsory tests – tests for TB, STDs, co-infections – as per the norm at YRG. Lakshmi explained that the tests would cost at least Rs 3,000 – about $66, a fortune for a lower-income family here. This, plus travel expenses to come to Chennai for treatment, missed days of work, the diminished capacity to work as the disease took hold later….YRG significantly subsidizes costs of tests and treatment for poor patients, but even still – how would they make ends meet? The clinical and public health world vehemently demonizes patients who miss drug regimes and contribute to resistance. But, faced with the choice between food on the table and a year-long course of TB drugs that cause vomiting and severe liver complications – can you blame anyone for opting out? They have a second uninfected child – what will happen to him when all of his family members die?
None of these questions have easy answers. Some may not have answers at all. But these are the realities that people face, as well as the realities that their caregivers must mitigate. Treatment. Care. Support. Education. Livelihood improvement. Poverty reduction. All of them are niches to be filled, while not forgetting the connections that must remain between them.
As I come to the second half of my fellowship, I am beginning to better appreciate that health, and the determinants and maintenance of it, is an entire ecosystem. I recognized that public health was my passion years ago, and decided to forgo a medical degree to treat the source behind the symptoms. However, I am realizing now that I have been wearing the same focused blinders that I saw and criticized within clinical medicine. Yes, there must be a focus on prevention, but that education and infrastructural improvement must be contingent with holistic care of those affected by health problems now.
Increasingly, I have been brainstorming the foundation of my own health coalition, focused on public-private collaboration to provide preventative and curative health services in geographically isolated areas. It must connect with some market interest to be sustainable; it must be scalable; it must be simple; it must be comprehensive. It is addressing an ecosystem of needs, and likewise needs to build upon a network of symbiotic relationships. Above all, it needs to strive to find that elusive balance between treating what exists and paving the way for a healthier future.
To do this effectively, I am now weighing options to try and find the most efficient and useful graduate degree that allow me to help on an individual basis, as well as a systemic health level. I am not sure what medical avenue would be the best route – MD/MPH, NP, PA, etc. – but I am beyond grateful for the valuable insight that numerous doctors, nurses, and fellows at YRG have given me regarding each option. I’m hopeful that the path I choose will give me at least a good platform to build the core of the coalition, while recognizing that other specialties – environmental, social, business-oriented, economic – must be incorporated as well.
There are so many niches that I could fill; whichever I do, I hope that I find a balance between making large-scale change and connecting, face to face, with the people that those changes affect.
Nicole Fox is based in Chennai, Tamil Nadu with YRG Care
