Best Beginnings Episode 14: What Dr Ingrid Katz told us about trust, stigma and the people medicine misses

Here is a fact that took Dr Ingrid Katz more than a decade to fully understand. In the early 2000s, at the perinatal HIV Research Unit in Soweto - next to one of the largest hospitals in the world - treatment for HIV existed, was funded and was being offered. It was free. It was life-saving. And one in five people who arrived having just been diagnosed were not starting it.

Not because they didn't know it was there. Not because they couldn't reach the clinic. But for reasons that a purely biomedical lens - the lens that says, of course you'd take life-saving treatment - cannot see.

What the numbers couldn't explain

The context matters. South Africa in the early 2000s was still living with the consequences of watching people die from something that had been treatable elsewhere for a decade. Treatment was, finally, arriving. And yet one in five newly diagnosed patients were walking away without starting it.

When Ingrid and her colleagues sat with patients and asked directly, they heard not confusion or indifference but something more specific. They heard about a pill bottle that, spotted by a neighbour, would announce a diagnosis. About early-generation medications that visibly changed the shape of a person's body. And repeatedly, a phrase that became a signal: "I'm not sick enough yet." Ingrid came to understand it as an indicator of how deep the stigma ran. Trust had been broken. The system had failed these communities for a decade while others elsewhere accessed the same treatment. And trust, she found, is not rebuilt by availability alone.

The room that told everyone's secret

One of the clearest examples came not from data but from a walk-through. Ingrid and her colleagues asked patients to literally map their journey to treatment to walk them through what it felt like to arrive at a clinic and try to access care. What those patients described was a waiting room where people with HIV were directed to sit on one side and everyone else on the other. A systems decision, made for administrative efficiency. Not intended as disclosure.

But what it communicated, to everyone present, including neighbours, was exactly who was living with HIV. "People understandably didn't want to be in a situation where their neighbour might see them sitting on that side of the room," Ingrid says. The solution was not a new drug or a new awareness campaign. It was moving the chairs.

What Ingrid found in one woman's pocket

The human version of all this arrives in a story Ingrid tells toward the end of the conversation. A young mother had known she was living with HIV for years. She had not started treatment. On the day she finally returned to the clinic, a physician asked whether she had been doing anything to stay healthy. She reached into her pocket and pulled out garlic pills and other supplements. Things gathered from the ecosystem of misinformation that surrounded her.

She was not irrational. She was navigating an economy that left little margin, a social world that stigmatised illness and the specific weight of new motherhood. "You couldn't possibly be sick," Ingrid says. "There was no time for that. You had to show up for your baby." She was also trying to earn money. She didn't feel safe carrying a pill bottle in public. The fear of being seen with it, of being judged, or worse, was a reasonable calculation. "There are so many reasons," Ingrid says, "all extremely reasonable in her world, to not take it."

The gap that medicine still hasn't closed

This is the gap Ingrid has spent her career trying to close; not in funding or in medical knowledge, but in understanding. A physician in a fifteen-minute consultation cannot see the full arc of the life that brought someone to a decision. The COVID-19 pandemic made this legible on a global scale: an extraordinary biomedical achievement with mRNA vaccines developed in real time met with a public health response that, in Ingrid's words, "just could not meet the moment." Decades of underinvestment in public health had left systems without the community trust to make the rollout work.

Her answer is co-creation: inviting communities to design the models of care they would actually use. And at the level of individual practice, a principle she calls humble inquiry, approaching each person not with answers but with genuine curiosity. "It doesn't mean that I know the most about the lived experience of someone else I'm talking to," she says. "There's nothing else I could bring that would outpace that."

The question that travels

None of what Ingrid found in the clinics of Soweto is unique to HIV, or to southern Africa. The question she started with - why don't people use support that's free and available to them? - is one that anyone working in early years will recognise immediately.

The treatment is there. The hub is there. The service is funded and offered. And still, the families who might need it most do not always come. The system around the support - the form, the waiting room, the sense of exposure - carries meaning its designers never intended. Trust is what determines whether any of it actually gets through.

That is, as Ingrid puts it, at the core of almost everything.