Sibyl Geelen (57) is a pediatrician specializing in infectious diseases and immunology at the University Medical Center Utrecht. She treats children with HIV.

How long have you been dealing with HIV and AIDS in Africa?

I started out in 2002–2003, training doctors as well as counselors and nurses in countries such as Nigeria, Kenya, Tanzania, Rwanda and South Africa. I provided information about HIV and AIDS and how best to treat them. At that time, medication was gradually becoming available there. A combination therapy already existed, but there were still no tablets or drinks for children. We had to open up the adult capsules to adjust the quantity for children. But medication alone does not work, you also have to train people to take it properly. I did a lot in that area.

What were the treatment options at that time in Africa?

Treatment was mainly available in the big cities and the major hospitals. Over time, it moved a bit more toward the countryside. People in the cities were better off because they could get treatment, while people in the countryside couldn't. For children it was pretty bad for a long time and it took a long time before there were options for them.

Why was it difficult for children?

We couldn't give them those great big pills. There wasn't any suitable medication. There were no drinks, that was too expensive. There weren't yet any smaller pills with child doses. Even the doctors and nurses didn't know how they should treat children.

We are now more than ten years on. Have you seen many changes?

Yes, the biggest change is that medication is available for a lot more people and that we can treat them. And that consideration has been given to children. That's fantastic. But we're not there yet.

Why are we not there yet?

It is important to give people good guidance and there are not enough doctors and nurses who can do that, for example. There are currently still too few children receiving treatment. The advice from the World Health Organization (WHO) is to treat all children under the age of five in Africa because that improves their chances, but who is going to do that and how do you do it well?

What can you say about the situation of young people with HIV in Africa compared to here?

I get the feeling it's very similar. They face the same challenges. They also have to take medication and feel different from their friends. They want to be 'normal' too, just like youngsters here. And the fact that they can't talk about it and that people walk by on the other side if they know that they have HIV, is also the same in the Netherlands.

Have you noticed any cultural differences in how information is provided?

There is certainly a cultural threshold; the male-female relationship is very different there. But in many programs, counselors are trained to teach adolescents and younger children to talk and negotiate about sex. How do you teach girls to come across as strong? There are certainly differences but generally I see many similarities.

Does your experience in Africa help with your work here at the outpatient clinic?

I think so. I think I learned a lot there from the parents and the children, but also from colleagues, counselors and nurses. Many parents and children that we see here at the clinic come from Africa. They like the fact that I can share in their experiences because I know their country. I also understand their background and why they are sometimes reluctant to talk about it. They have often experienced quite serious things. I can also explain to the children why it's hard and different for their parents. That creates added value.

Here in the Netherlands, you have been following a large group of children for a long time. What is your impression?

They are great kids and it's really nice to be able to give them guidance. I think it's fantastic that they're growing up healthy and that they're generally very positive in life. Acceptance often follows a difficult phase during puberty where a lack of therapy compliance is lurking. Once that period is over, you see that things do calm down a bit and they can look positively to the future. "I can do anything I want and I won't let this illness hold me back."

Are they interested in the medical details of the illness?

Absolutely! Most of them at least. But that also depends on the child. One child wants to know broadly and another wants to know everything in great detail. How the medication works and how the virus can become resistant if you don't take your medication. But almost everyone wants to know what exactly HIV involves, what the medication is for and that sort of thing. Even younger children. But their parents are often reluctant and don't yet want to say that it's HIV. They are afraid that the children will spill the beans. But the children feel that the issue is being evaded, that something is not being identified, and that bothers them. When it's revealed and they know it's HIV, they often say: "Is that all?"

What are your experiences of adoptive parents?

They have consciously chosen a child with HIV and want to collaborate. We don't yet know exactly what they need or how we can best help them. We want to find that out. It's a very different group of parents, very assertive and well educated. They want all the information there is. And that's great because that way they can help decide what's right for their child. Many African parents have a different background, sometimes they don't even know what a virus is. Then you have to start at a completely different level.

So you want to investigate how you can better help the adoptive parents?

We are planning a study on how we can best guide and support adoptive children and their parents. What do we need to bear in mind, how can we intervene if things aren't going well? We are also interested in the medical situation when the children come to the Netherlands. We have the information but we want to compile it.

What's the reason for this?

We always had a small group in the Netherlands, but now we are seeing more and more African and Asian children coming in with HIV. This group of children is very different. Medically we know how to treat them, although we sometimes see children who already have quite resistant viruses. These children have been treated, but not well, which presents challenges. Adoptive children are already a challenge in themselves. We are very interested in how things will go with the children: will the child bond well and feel at home? How will they deal with the fact that they're adopted? Does a colored child in a white environment face additional problems? And also, the child has HIV but the rest of the family doesn't, they have to take medication, and there's also secrecy; how open are you with the people around you? And how does that work with adoptive parents, what are they facing? We wanted to address that. We are currently working on the framework for a study.