The Tough Questions

We had taken two different propeller planes to get up to the clinic in the Ubombo District, near the Mozambiquan and Swaziland borders. A few doctors from the hospital I work at in Durban travel up here twice a month to assess particularly difficult clinical cases and check up on ongoing research projects. I had been lobbying to go on one of these trips for a long while, but the size of the tiny planes we flew in – 9 and 4 seats, respectively – had made it impossible for me to tag along until this week. Dr. S needed a hand capturing some viral load and CD4 data for a group of patients with probable HIV mutations.

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When the girl first walked into the consulting room, it was hard to tell how old she was. This is a somewhat common feature of HIV positive people on antiretroviral (ARV) medications. The drugs – especially those still being used in the developing world – often have a metabolic side effect that causes your body to redistribute fat away from your limbs and face. The condition, called lipodystrophy, occurs less frequently amongst those on second- and third-generation ARV regimens, gives the appearance of premature aging.

After opening up her medical history and jotting down her name, I saw that she had just turned 13. The rest of the notes were even more sobering: she had tested positive in 2005 at 11. I tried to come up with a list of reasons why anyone might seroconvert around that age, quickly throwing up a series of red flags in my mind. Too many of the possibilities centered around the South African realities of forced or coerced sex.

Fortunately she had been tested early, received good care, and had started taking a three-drug ARV regimen as soon as possible. She had been taking ARVs for nearly 2 years now, and was virologically failing her first line regimen. Her viral load had spiked over the past few months, indicating that the virus had become resistant to her current treatment.

This happens for reasons that can be generally grouped into one of two larger categories: inadequate regimen (e.g. prescribing error, resistant bug, malabsorption) or poor adherence (patient non-compliance for any number of reasons). We needed to figure out which camp this girl was in. With laboratory results being difficult to come by in this incredibly rural clinic on top of a mountain in the middle of Zululand, a patient interview to exclude the poor adherence possibilities seems to be the best way to proceed.

The nurse translated as Dr. S started asking questions to the girl and her Gogo (Zulu for grandmother, with or without blood relation) to try figure out what might be going on. “Who gives you your medications? How many pills, how many times each day? Does anyone at school know you are taking ARVs?” These are pretty standard questions to test for pediatric adherence, and it usually becomes obvious when the child isn’t adhering their treatment. The girl seemed confident in her answers to each of these questions, and I thought we were done with the interview.

Dr. S, however, proceeded to take his questioning in a direction I wasn’t expecting: “Do you know what these drugs are for?” I had been copying down the girls’ labs values into my notes, but as the question was asked I froze and slowly looked up. The girl looked to the nurse for a translation and paused for a while before slowly nodding her head. Dr. Sunpath stroked his mustache, unconvinced, and asked one final, heartbreaking question: “Do you know what you have?”

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I don’t know if the way Dr. S phrased this final question was quite sensitive enough for the situation, but his line of reasoning was exactly right. I think we also disagree about the information contained in the girl’s final answer – I assume she knows less about her HIV status than Dr. S does – but it was an incredibly powerful moment to experience in person.

The rest of the consultation finished up quickly. Dr. S recommended she come back in three months’ time for some new viral load and CD4 studies, and to reassess her clinically. As the nurse pulled the door closed behind the girl, Dr. S and I placed our pens down and put our palm flat on the table, as if to steady ourselves. After a few deep breaths, Dr. S spoke: “Could you send in the next patient please?”

From the flight home: