Nairobi — She is frail, skinny and looks about five-years-old. But the girl, who greeted me with a bright infectious smile when I visited women fighting aids Kenya is twelve-years-old.

She spends most of her time at the Women Fighting Aids Kayole Centre, her second home, where she gets a free meal and drugs everyday.

The centre's Co-coordinator, Ms Helen Jasianga, says the girl is intelligent. "She understands she's HIV positive and makes sure she takes her drugs every day. She even encourages other children to take their drugs," says Jasianga.

Too young to suffer stigma

Although the centre provides her with anti-retroviral (ARV) drugs, she faces many challenges. Her sickly mother is living with Aids, has no steady income and survives on brewing illicit alcohol. "I try to make sure she gets good nutrition but I have five other children to care for. I tried to leave her at Kenyatta National Hospital (KNH) children's ward for the State to care for her but she sneaked out and followed me home," her mother says.

As if being sick is not bad enough, the girl has to deal with stigma and discrimination.

Her siblings who are all HIV negative initially had problems accepting her status. "Her brother warned her to stay away from him because she is positive but I have since counselled them. They now understand her condition and even make sure she takes her medication," her mother says.

But acceptance at home has not translated to acceptance in school. While she is at peace with her condition her teachers are not.

When schools open next week, she will have to look for one that will accept her.

Her mother says teachers told her not to return when school re-opens. "Some classmates do not want to play with me because I am sick. My teacher has even designated a special chair for me, which no other pupil sits on," she says.

Paediatric ARVs are scarce.

The stigma does not seem to worry her. Her only worry is that she gets a steady supply of her drugs. "I take my medicine every day so that I do not get sick. I want to stay healthy and grow up to be a nun," she says.

"I would be happy if someone gave me a mosquito net, a bed and a nice mattress to sleep on," she adds.

With all the challenges she faces the little girls is lucky to be accessing Anti-retroviral drugs. Paediatric ARVs are scarce.

Prof Ruth Nduati, a paediatric HIV expert and lecturer at University of Nairobi, says 120,000 children need ARV therapy yet only 8,000 are accessing the treatment.

This is due to a number of challenges.

ARV therapy for adults is cheaper and easier to administer. Until recently paediatric drugs cost three times as much as those of adults.

Children are not an attractive market

Children are also more complicated to treat, partly because their medication must be constantly adjusted as their height and weight change.

"Children who need treatment have to drink great amounts of foul-tasting syrup or swallow large tablets, and that's only if they are even able to access treatment in the first place," said Dr David Wilson, Medical Coordinator of MSF programmes in Thailand at the XV International Aids Conference in Bangkok two years ago. "Pharmaceutical companies do not bother to develop paediatric formulations of Aids medicines because children are not an attractive market," he said.

For many of the children, the problem begins at birth.

Nduati says half a million pregnant women have access to HIV testing but not all who are found positive can access nevarapine, a drug that is administered at birth to reduce the risk of HIV transmission from mother to child. "Only 60 per cent of pregnant women who are HIV positive access nevarapine," she says.

The number of HIV positive children is rising. It is estimated that there are 30,000 new infections annually.

With successful interventions the risk of mother to child HIV transmission can be reduced to two per cent.

Tests kits for children are very expensive

Nduati says the disease progresses faster in children which partly explains why Kenya ranks highly in the under five-mortality rate. Nduati says a conclusive test on a child's HIV status can only be accurate when the child is at least two years old. Tests done below that age are not conclusive due to the presence of the mother's anti-bodies. But most HIV positive children die by six months. There are specialised tests that can detect the virus in babies but they are very expensive. Currently the tests are only available at the Centre for Disease lab in Kisumu.

Nduati says although the country has stocks of ARV drugs that are at risk of expiring their distribution are hampered by lack of clear procedures on ordering, stocking and accountability. Consequently, she says, most public health centres do not stock ARVs.

For ARVs to be effective consistency is necessary yet most HIV positive children have lost their parents and have no permanent home, which makes monitoring difficult. And some parents refuse to take their children in for treatment.

No child counselors

"Most children who are HIV positive are orphaned or their surviving parent is too sick to care for them. These children are forced to fend for themselves. It is difficult for them to access the special diet that is required," she says.

Nduati says that while testing should be accompanied by supportive counselling there are few child counsellors.

The Government is in the process of setting up a curriculum to cover child counselling. Presently Maragua District Hospital, Kenyatta National Hospital and Moi Referral are the only public hospitals offering child-counselling services.

Nduati says what is happening to children is a social injustice.

Children have no voice

She says the best way to reduce mother to child transmission of HIV is to improve care and treatment of pregnant women.

She says paediatric HIV has been ignored because children have no voice and cannot influence policy. She says the Government should invest more in paediatric HIV.

While acknowledging that HIV testing for very young children is expensive, Nduati says we should not give up. Currently the Clinton Foundation is paying for 90,000 tests per year and there are four more labs being established so that specimens do not have to be sent to Kisumu.

"The brain of a human being develops below the age of two. It is therefore imperative that diagnosis is made as soon as possible so that therapy can start. Children on ARVs have responded very well and grown up to be productive. They have less side effects to the drugs," she says.

Nduati says routine HIV testing needs to be encouraged. KNH offers routine testing but lack of counsellors and issues of disclosure create impediments.

The Government needs a clear paediatric HIV policy to ensure drugs are available and supportive therapy is given to infected children.

Nduati says neglecting children generally when it comes to budget provisions is a major shortcoming. "We need to work on formulations for children that make it manageable for young children to take the drugs daily," she says.

There is a shortage of well-trained health workers who can handle HIV competently.

Children have a right to life, survival and development. The little girl in Kayole has a right to enjoy her childhood despite being HIV positive.