HIV treatment is very effective in children with HIV, making it a long-term, manageable condition. Babies, children and adolescents – like everyone else living with HIV – are recommended to take HIV treatment.

In the UK, the standards of HIV treatment for children are set out in guidelines produced by PENTA, a network of paediatric HIV centres across Europe. The most recent guidelines were published in 2014.

Treatment consists of taking a combination of different anti-HIV drugs. (Sometimes drugs can be combined into one tablet or liquid, called a ‘co-formulation’.) If these drugs are taken properly, levels of HIV in the blood reduce to very low levels. This is called an undetectable viral load and is one of the main aims of HIV treatment.

Untreated HIV infection weakens the immune system. Having an undetectable viral load doesn’t mean that a person has been cured of HIV. The virus is ‘put to sleep’ by the HIV treatment. If your child stops treatment, new virus will immediately start to be made again. However, while your child is on treatment, because there’s very little HIV in the blood, the immune system can stay strong and fight infections. This means that your child will have a good chance of staying well.

There are currently over 20 anti-HIV drugs available, but not all are approved for treating children with HIV. Furthermore, some drugs can only be taken by older children.

However, you may find that your child is prescribed an anti-HIV drug that hasn’t been formally approved for use in children. The use of medicines in this way is guided by current expert medical opinion and practice.

If you have any worries about your child’s medication, always speak to his or her HIV doctor (paediatrician). Never stop giving your child his or her medication without speaking to the doctor first.

The doses of anti-HIV drugs given to children will depend on either the child’s weight or size. These will be regularly monitored by the clinic to make sure your child receives the safest and most effective doses of their treatment. As your child grows and their weight increases, their doses of anti-HIV drugs will be changed. It is important your child attends all their HIV clinic appointments so they are receiving the right dosage of HIV treatment.

The sooner your child starts HIV treatment, the sooner he or she can benefit from it.

In particular, HIV treatment should be started before your child ever becomes unwell. If your child is showing any signs of a weakened immune system (if they are often unwell, for example), they should start HIV treatment as soon as possible.

The choice of drugs used to treat your child will depend on a number of factors. These include the child’s age and weight, and whether the child has any other illnesses. Clinic staff will consider which combination of drugs might be easiest for your child to take, to help with adherence (adherence = taking medicines properly, at the right time, every day). See below for more information on taking HIV treatment.

If a mother has developed a strain of HIV that is resistant to some anti-HIV drugs, it’s possible that this resistance may have been passed onto her child. Your child should have a resistance test when decisions are being made about the most suitable combination of drugs for him or her.

A test (HLA B*5701) should also be performed to check for the possible severe hypersensitivity reaction to the drug abacavir (Ziagen, also in the combined pills Kivexa and Trizivir). If the HLA B*5701 test is positive then your child should not receive abacavir. See Side-effects for more information on hypersensitivity reactions.

There are different types, or classes, of anti-HIV drugs. These work against HIV in different ways. To ensure that HIV treatment is successful at suppressing the virus, it is usual to take a combination of three anti-HIV drugs and these will come from at least two different classes of drugs. You can find out more about the classes of anti-HIV drugs, and about the drugs in each class, in NAM’s booklet Anti-HIV drugs, or by using My drugs chart, an online tool to create a personalised drug chart.

The preferred first-line combination for children comprises two drugs from the nucleoside reverse transcriptase inhibitor class (NRTIs) – often called the “backbone” – plus either a non-nucleoside reverse transcriptase inhibitor (NNRTI) or a protease inhibitor (PI), two other classes of anti-HIV drug – often called the “third agent”.

NRTIs

Under 12s: Abacavir and lamivudine are the most likely recommended combination of NRTIs (backbone drugs) for children under twelve years of age. If your child is HLA B*5701 test positive, then zidovudine and lamivudine or tenofovir and emtricitabine may be recommended.

12 years and over: Either abacavir and lamivudine or tenofovir and emtricitabine are recommended and may be offered in combined tablets: as Kivexa (abacavir/lamivudine), or Truvada (tenofovir/emtricitabine).

NNRTIs and PIs

The NRTI drugs are combined with either an NNRTI or a PI. If an NNRTI is chosen, for children aged under three, the preferred NNRTI is nevirapine (Viramune). For children aged over three, the preferred NNRTI is efavirenz (Sustiva).

Protease inhibitors usually have their anti-HIV effect boosted by taking them with a small dose of a second protease inhibitor called ritonavir. If a PI is chosen:

Under 6 years: The boosted protease inhibitor, Kaletra (lopinavir/ritonavir) is the most likely drug to be chosen.

6-12 years: atazanavir (Reyataz)/ritonavir is the most likely drug to be chosen.

12 years and over: atazanavir (Reyataz)/ritonavir or darunavir (Prezista)/ritonavir may be chosen.

Kaletra is the only formulation which has both the PI and the ritonavir “booster” combined in the same tablet or liquid; for all the others the booster must be taken separately.

In certain circumstances, an integrase inhibitor – either raltegravir (Isentress) or dolutegravir (Tivicay) – may be offered for children aged 12 and over.

If your child is starting treatment during adolescence (12 years and over) it is often recommended that treatment starts with a boosted protease inhibitor. When viral load is well controlled your child can switch to NNRTI-based treatment. This is intended to reduce the risk of drug resistance if there are early problems with taking medication (HIV is less likely to become resistant to PIs than NNRTIs).

The aim of HIV treatment is an undetectable viral load. All viral load tests have a cut-off point below which they cannot reliably detect HIV. This is called the limit of detection. Tests used most commonly in the UK have a lower limit of detection of either 40 or 50 copies/ml, but there are some very sensitive tests that can measure below 20 copies/ml. If viral load is below 50 copies/ml, it is usually said to be undetectable.

Once your child starts HIV treatment, their viral load will begin to fall and their CD4 cell count will begin to go up (see Types of blood test: CD4 and viral load.)

If your child’s viral load doesn’t fall to undetectable levels within six months of starting HIV treatment, or falls to undetectable and then increases to detectable levels in two successive viral load tests, then his or her treatment may need to be changed.

First though, it’s important to understand why the virus has become detectable again. If it’s because your child is having difficulty taking their medication, the clinic staff may be able to help resolve this, so the treatment becomes effective again.

If treatment doesn’t reduce the viral load to an undetectable level, your child may develop drug-resistant HIV – virus that doesn’t respond to the drugs he or she is on. This can make it harder to find effective anti-HIV drugs that work to control the virus in the future. A blood test called a resistance test can check for this, and identify which of the HIV drugs will not work any more.

The choice of the next combination of anti-HIV drugs that your child takes will need to consider the following factors:

• resistance to any anti-HIV drugs.
• what other anti-HIV drugs are available in formulations for children.
• whether a combination is likely to make it easier for your child to take.

It’s important to remember though, when the first treatment fails it is really important to make sure everything is done to give you and your child the best support in making sure the next combination of medicines is taken properly, otherwise it is likely that it will stop working too, leaving fewer options for the future.

Taking HIV treatment properly is called adherence. Your child will get the most benefit from their HIV treatment if it is taken properly. 

This involves:

• Taking all the doses of medication.
• Making sure that any food requirements or restrictions are observed.
• Making sure that doses are taken at the right time.

Missing doses or not following prescribing instructions can mean that the drugs aren’t as effective and viral load increases. This can lead to the development of drug-resistant HIV.

The healthcare team at your child’s clinic will talk to you and your child about starting or changing treatment, and what it will mean. Be honest with them about anything that you think might affect your child’s ability to take his or her treatment, or your ability to give it. This could include practical factors, such as your daily routine or the fact you live with people who don’t know your child has HIV. Clinic staff will be able to offer advice and support.

The clinic will also be able to give you some tips about how to give medicines to your child and how to increase the chances of him or her taking them in the right way.

Some useful methods may include:

• Involve your child. For example, let your child choose the cup used for water to take with the medicines. Or keep a chart, and let your child record each dose of medicine taken, perhaps with a colourful sticker.
• Explain to your child that the medicine is needed to keep them well, that it’s not negotiable, and make sure they understand the boundaries.
• Establish a routine. If your child takes their medicine at the same time every day, they’ll get used to doing it. Make it like cleaning their teeth, just something you do every day to keep strong and healthy for the future.
• Praise your child after each dose is taken.
• Teach your child how to swallow pills. Pills are much easier to manage than liquid medicines. The clinic will show you how to encourage and develop your child’s pill-taking technique. For example, placing the pill near the back of the tongue and then washing it down with a good mouthful of water, followed by another good mouthful, can stop it moving around the mouth, which can make people gag or feel sick.
• Your child may need to practise taking pills for a few days or weeks before they start their HIV medication. Training them to swallow small sweets can be a useful way forward.
• If your child is taking a liquid formulation, use a medicine spoon or oral syringe to make sure you are giving exactly the right dose.
• If you are taking HIV treatment yourself, you and your child could take your anti-HIV drugs at the same time. If your child has an adult role model who is positive about HIV treatment, this will encourage them to develop good adherence habits.

Older children who have a smartphone may find it helpful to use a phone app to remind them to take their treatment. You can find the iDiary on the website for HIV-positive young people, Pozitude (www.pozitude.co.uk/apps) but there are others. Your child can find them on the app store for their sort of phone. Some are available free of charge and some will also help them keep track of the number of pills they have left in a supply.

It’s important that you, and – as far as possible – your child, are committed to them taking treatment. Make sure you feel positive about treatment, whether it’s for you or your child. Try not to dwell on the downsides of your child being on treatment, but concentrate on the health benefits of it. If you are finding it difficult, talk over your feelings with someone at your child’s HIV clinic, or at an HIV support organisation. The clinic may give you a number to contact if there are problems outside clinic hours.

Staff at the clinic will ask you about adherence at each of your child’s clinic appointments. Make sure that you tell them if your child is having problems taking his or her medicines. Many of the anti-HIV drugs used to treat children are available as either pills or liquid. If your child is having problems taking pills, then it might be possible to switch to a liquid. Or it may be possible to switch to a combination that involves fewer or smaller pills. Everyone has difficulties with medications at some time or another, so don’t feel afraid to tell the clinic team how it’s going for you, as they will understand. If you let them know, you can all work together to try to find another solution.

There’s more information on taking HIV treatment in the NAM booklet, Taking your HIV treatment. Although this is intended for adults, a lot of the information in it is relevant to children. There are also useful resources on the CHIVA website for you and your child about taking HIV treatment (see www.chiva.org.uk). The organisation Body & Soul has produced a booklet about treatment for older children and teenagers (see http://bodyandsoulcharity.org/teens/intro/this-is-how-we-do-it-2/).