Dasja Pajkrt (46) is a pediatrician specializing in infectious diseases and immunology at the AMC Hospital in Amsterdam.

What is your role?

I'm a pediatrician specializing in infectious diseases in children and immunology, which means everything to do with the immune system.

When do you give medication to a child with HIV who has only just come in to see you?

First we look at what symptoms the patient has and whether any other infectious diseases are active in addition to the HIV infection. Tuberculosis, pneumonia and gastroenteritis, for example, often occur alongside an HIV infection because the HIV virus has compromised the immune system. These other infectious diseases then also need to be treated. If the child has no symptoms of the HIV infection at all (and that often happens), and no other illness, then all that remains for me to do is to check the blood and see, in particular, if the number of CD4 cells, the good protective soldiers in the blood, is sufficient. We usually repeat this blood test every three months during an outpatient visit to the hospital. If a child has no symptoms but you can see that the CD4 cells are slowly declining, then at some point we will recommend starting medication against HIV so that the HIV virus disappears from the blood and the CD4 cells increase again. There are international criteria in place for this. International guidelines, based on the results of studies, advise us when children should start taking medication. We change these guidelines every so often as new insights emerge from the latest studies.

What about very young children with HIV?

A child with HIV who is under the age of two is always put on medication immediately. If you don't do this, the chance of death is high. We know that of children born with HIV who are not treated, 50% die within the first year of life. The benefit is therefore enormous. If you help the immune system with medication, the long-term effects are beneficial. In the Netherlands, we now barely have any children with HIV under the age of two because since 2004, all pregnant women have been tested for HIV. If you have an HIV infection, you are given medication. The baby is also given medication for a month after the birth. Therefore the chance of the child being infected with HIV via the mother is practically 0%. No children are actually born with HIV in the Netherlands. The children with HIV come from abroad. They are often a bit older. If they come from abroad, they are usually the stronger children who have survived the first years (often without medication). These children have a less severe HIV infection and have been lucky.

Are there other preconditions?

We also always look at the situation at home before we start giving medication. The children are taught how to take the medication. A three-year-old child cannot yet swallow tablets so he or she will be given it as a drink. Not all the drinks taste nice, but little children usually still take them well. However, we prefer to give tablets because it's easier. Oddly enough, an adult often only needs one tablet a day while a child of around six years old sometimes has to take four or five tablets. That's because not all medications are available in child doses or as a combination tablet. So we very often act as pharmacists. Giving medication to children is much more complicated than to adults.

You receive the combination therapy for your whole life. What are the long-term effects of the medication?

I don't want to sound negative but actually any organ, even if you receive good treatment, can be affected in the long term by the HIV infection or by the medication used to treat it. It's hard to say what causes what. Some patients develop diabetes or cardiovascular problems. But the HIV infection and the drugs also have an effect on the bones and the body's lipid profile. Everything is affected in fact. Neurological disorders, such as forgetfulness, also occur. Basically a kind of dementia. We don't yet know that much about the neuropsychological effects. A young child that has yet to fully develop and is born with an HIV infection is obviously different from an adult who is already fully developed before they become infected. It is a completely different dynamic, and we are continuing to learn more and more about it.

Are the negative effects of the medication in a child different than those in an adult?

In general, we can say that children tolerate medication better than adults, and that also applies to other diseases. If you take medication for your HIV infection and you start experiencing symptoms, such as gastrointestinal problems, or you struggle to concentrate, have nightmares or don't feel well in yourself, then you must discuss this with your doctor. Often there is something that can be done about it, such as switching to a different medication that has fewer side effects.

Do the children talk easily about their symptoms?

You have to really keep asking, and even then I don't know if children will tell you everything. But I've often known the children for many years and I think I can say that I know most of the children well and what problems exist. At the AMC Hospital, we also use the KLIK questionnaire. KLIK is a Dutch abbreviation that means Quality of Life in Clinical Practice and is a method of monitoring how children with a chronic disease are doing. Before their visit to the outpatient clinic, the children receive an email at home inviting them to fill out questions on the KLIK website. Children enjoy doing this. It allows them to express what's going on in an accessible way. We are able to take into account their age and what could be happening at that time. We would ask teenagers different questions than an eight-year-old. We look at the questionnaire together and discuss any salient points. This hopefully enables us to obtain a fairly complete picture of what problems children are experiencing.

How do the children's parents cope with HIV?

All parents of children with a chronic condition have their own story. Parents of children with an HIV infection even more so, because there is still a stigma associated with HIV and a sense of guilt. Mothers in particular have that sense of guilt because they were often also infected with HIV. For convenience, you could sort the HIV-infected parent or parents into different categories: parents who are more open and openly want to guide their child, and parents who themselves find it hard to deal with the HIV infection. The open parents are actually kind of buddies for their child. They talk openly about their own illness and discuss their child's problems openly as well, which is helpful for the children. The parents who find it hard don't just feel guilty themselves but also have a sense of guilt toward their children. They don't talk about the HIV infection at home and often pretend it doesn't exist at all. Even though they put on a brave face in the consulting room, there are often a lot of problems going on at home that we don't always hear about, which is a shame. The dialog between the parent and child or between the parent and the doctor then remains a bit more difficult.
In addition to this, we also see a third group: the adoptive parents. More and more children with special needs are being adopted. HIV is also considered a special need. These parents are well aware in advance that their adoptive child has HIV. It is of course very different for them. They don't feel any shame or guilt. However, this group of parents often struggles with the questions: which of the people around me or family members should I tell that my child has HIV? Because it is unfortunately still the case that HIV-infected children are treated differently by those around them than children with diabetes, for example.

When do you tell the children that they have HIV?

Children of around the age of four are unable to properly judge who they can say what to. They blurt everything out and don't think about the consequences. That's why we tell them when they're a bit older, so that they can consciously decide for themselves who they tell and who they don't. In the Netherlands you have a right to know about your illness from the age of twelve. That's the point at which children have to be informed about the condition they have. We also know from experience that if a child knows why they have to take medication, then they are better at taking it. Then the pieces of the puzzle fall into place. Therapy compliance is the most important part of the whole treatment. It is really essential. And it can only be really good if you are equipped with knowledge about your own condition. The parents are not obliged to tell anyone that their child is infected with HIV – not the dentist, not the school, not anyone.

Theoretically, could the dentist have a chance of infection? What happens if something goes wrong?

The chance of transmission is extremely small. What's more, the dentist should regard each patient as potentially infectious. That goes for the dentist and the orthodontist – everyone has to ensure a certain level of hygiene. If you do that then there is no problem. I don't know of any cases of something going wrong.

Are there new developments relating to getting pregnant with HIV?

Up to now, the advice in the Netherlands for couples in which one or both partners is/are HIV positive, was to use a condom. Research now shows that if you are a close couple and take your medication well (which means that the virus in your blood is as good as gone), the chance of HIV infection is very small.
Therefore, the Dutch Association of HIV-treating physicians has relaxed the advice slightly. If your blood has been free of the virus for more than six months and you're in a long-term relationship, then you can have sex without a condom. However, for young people with HIV, I am a bit hesitant to issue this advice. Adolescence (from the age of 12 to 24) is a tumultuous time, including sexually. So I don't think it's very sensible to advise them to have sex without a condom. Also because they could contract all kinds of sexually transmitted diseases. This advice is therefore intended for married couples or people who have been together for many years and want to have a child and who have been treated properly for a long time. They can actually just have sex in the normal way, just as healthy people do. Previously, the sperm was collected from the man, cleared of the HIV virus and then put back into the woman, which resulted in fertilization taking place. In these specific cases, this is now no longer necessary.

Do you expect even more new developments?

In the short and medium term, the focus is on simplifying the medication schedule. One tablet once a day. I expect that in pediatrics as well. More different drugs in one tablet. The burden of the number of pills is decreasing.
Another development is more scientific. By treating infected people earlier (starting treatment once you know you have HIV), you therefore also reduce the number of newly infected people.
Another focus is on curing HIV. That's not yet possible at the moment, we can only suppress the illness. There is enormous activity in the field of HIV vaccine development. I'm an optimist. I have the feeling that within ten years we could dramatically reduce the number of new HIV patients worldwide. And that maybe within twenty years there'll be an actual cure.