Interview by Marlon Gattiker

Mr. Paioni, could you briefly introduce yourself?
I'm from Ticino, a pediatrician and infectious disease specialist, with a particular interest in children and adolescents. I've worked for over ten years at Zurich Children's Hospital, where I'm responsible for, among other things, the HIV consultation. I discovered HIV at a young age through film and television, for example the movie Philadelphia. This subject and the mechanisms of this infection interested me and shaped my professional path early on.

What's particularly important in caring for children living with HIV?
The big difference compared to adults is that children are constantly developing. This concerns growth, but also their understanding of their infection and their capacity to take on responsibility. An eight-year-old doesn't have the same needs as a sixteen-year-old adolescent. Care must therefore constantly adapt.

We also accompany many of these children for years. This sometimes creates close bonds with families. We get to know each other well and often go through important life milestones together.

How many children living with HIV do you still follow today?
Thanks to major progress in preventing vertical transmission – that is, transmission of HIV during pregnancy, birth, or breastfeeding – there are very few new infections in newborns in Switzerland today. It's a huge success.

When a pregnant person is well treated and their viral load is undetectable, the risk of transmission to the child can today be reduced to practically zero. Many of our former patients are now adults and have moved on to adult medicine. So we now only regularly follow a small number of children.

An important part of our work, however, concerns children exposed to HIV. These are children who were exposed to the virus during pregnancy or birth without themselves contracting HIV. They are medically monitored and tested after birth.

How does this work medically?
Today, modern PCR tests allow us to determine very early whether transmission has occurred. These tests look directly for the virus and are much more precise than the methods used previously.

If the mother follows her treatment well and her viral load remains durably undetectable, the child often doesn't even need preventive treatment after birth. This shows how significant medical progress has been.

How is the question of breastfeeding viewed today?
Here too, a lot has changed. In the past, breastfeeding was generally discouraged in Europe. Today, advice is more individualized. If the mother is on appropriate treatment, her viral load remains undetectable, and close medical follow-up is ensured, breastfeeding can be considered under certain conditions.

This question also has a social dimension. When a mother doesn't breastfeed, it can raise questions among those around her. This shows that HIV-related stigma hasn't completely disappeared.

How is a child's HIV diagnosis explained to them?
It's not a single conversation, but a process that spans several years. Explanations must be adapted to the child's age and evolve with them. At school age, we often start with simple images or comparisons. Later, information becomes more concrete and detailed.

It's important not to wait too long. As children grow up, ask questions, or hear about HIV at school, they should already have received age-appropriate information.

Why is early information so important?
When the subject is postponed too long, it often becomes more difficult later. Adolescents generally sense that something isn't right – because of the medications or regular medical appointments, for example. If they then discover information about HIV at school by chance and make the connection themselves, this can cause insecurity and undermine trust.

Everything then has to be explained at once: the diagnosis, treatment, sexuality, non-transmissibility, and stigma. This can be overwhelming.

When the infection isn't accepted internally, this sometimes shows up indirectly – through missed medication, missed appointments, or psychosomatic symptoms like nausea after taking treatment.

That's why early, gradual information is essential: the child can come to understand things over time and learn to live with HIV.

What role do parents play?
A central one. In the early years, they organize appointments, give medication, and take on responsibility. At the same time, some parents have their own fears – for example, that their child might reveal the diagnosis and face negative reactions.

That's why we always accompany the parents too. When they gain confidence, it helps the child enormously. Later, the focus gradually shifts toward the child and then the adolescent.

What progress has been made in treatments?
It's considerable. Current medications are much more effective, better tolerated, and simpler to take than in the past. Often a single daily dose is enough. Child-friendly forms, like orodispersible tablets, have also made things much easier.

This greatly improves quality of life, both for children and their families. Treatments used to be complex, harsh, and associated with more side effects.

What challenges remain in daily life?
School, camps, or sleepovers at friends' houses are important situations. The question often arises: who needs to be informed? Who do you tell – and who not?

Many parents fear negative reactions. Still, it's helpful for at least one trusted person at school to be informed, for example before a school trip. It's often mainly about informing people and reducing unwarranted fears.

Does stigma remain a problem?
Yes, unfortunately. Even though medical progress is immense, certain old attitudes persist in society. Some families still fear exclusion or the spread of personal information.

That's precisely why information remains essential. Today, HIV is very treatable, and people with an undetectable viral load do not transmit the virus sexually.

What topics become important in adolescence?
During this period, questions of self-image, autonomy, relationships, and sexuality take on great importance. At the same time, adolescents have to learn to manage their own treatment. This doesn't always happen without difficulties.

When the diagnosis has been explained and gradually integrated, things are generally easier. If this understanding is lacking, problems can arise with taking medication or keeping appointments. Additional support, sometimes psychological, then becomes necessary.

How does the transition to adult medicine work?
Here too, it's a process rather than a fixed date. We prepare adolescents over several years so they understand their illness and can manage their treatment independently.

The actual transition generally takes place around age 17 or 18 – when the person is ready. What matters is that no one is simply "transferred," but accompanied through this new stage of life.

What do you hope for the future?
Medically, we're already very advanced. My main wish is that social stigma continues to decrease. Children and adolescents living with HIV should be able to grow up without fear.

Today, these young people have the opportunity to lead a completely "normal" life. Our mission is to support them as best we can on this path.