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Last Updated: Monday, 1 December, 2003, 11:11 GMT
HIV drugs: Choosing 10 children

Noah, aged seven, from Jajja's Home at the Mildmay Centre just outside Kampala.
Seven-year-old Noah did not fit the criteria for receiving ARV drugs
Physiotherapist Nicki Pearson works at an Aids care centre in Uganda.

She describes the difficult task of helping choose 10 out of more than 1,000 children to receive life-extending anti-HIV drugs.

I have been working at Jajja's Home at the Mildmay Centre just outside Kampala, which provides care for more than 1,000 children with HIV/Aids, for around two years.

We have a handful of kids - up to 15 - who are on antiretroviral (ARV) treatment at the moment. All of these children need sponsorship - it's not something the centre can provide on its own.

To sponsor a child for ARV therapy costs in the region of 850 a year, with much of this money coming from the UK.

Setting the criteria

Our biggest single donor to date is a medical equipment company, which offered to sponsor 10 children in one go.

I remember looking around the room that day - and I think I just went off and had a good cry
While it was a boost for the centre it presented us with the dilemma of having to choose 10 out of all the kids on our books - probably a couple of thousand in all.

If all those children were in the UK they would have fulfilled the criteria of being eligible for ARV treatment. But we had to set out our own criteria for choosing them.

How we picked them has to do with their social set-up at home.

There's no point giving these drugs to young kids if there's no one at home to make sure they take them - twice a day, 12 hours apart - or making sure they receive enough food and nutrition, which is essential.

Physiotherapist Nicki Pearson with three-year-old Jacob, Mildmay Centre, Uganda
Nicki Pearson with Jacob, a three-year-old Aids orphan
Also someone has to be prepared to bring that child in to be monitored or to receive any other medication they require, like antibiotics or painkillers, if they are suffering from an infection.

If they're well they just have to come in once a month.

Those are our main criteria.

There are other health concerns to consider as well - some children can get a very severe form of cancer that can only really be successfully treated by raising immunity levels and the only way you can do that is through the ARVs.

Emotional choice

I personally found the whole process of choosing very hard. We try not to have favourites here and obviously there are loads of kids who don't have parents and want to be your favourite.

ANTIRETROVIRAL DRUGS

I became very close to one particular boy over the past two years.

We all went off and had our discussions and obviously you put forward the kids who are most in your heart and unfortunately my little boy, Noah, who is seven years old, wasn't going to be among them because he's a total orphan.

He is looked after by a neighbour - we've never seen the neighbour, she's never come into any of our training sessions, where we teach people how to manage children with Aids.

We just didn't feel as though he had the social support to enable him to be one of the chosen few. I just remember looking around the room that day when we decided what children would receive the treatment and I think I just went off and had a good cry.

One teenage girl, who we lost, used to say 'they taste awful, they're bitter, every day they remind me that I'm sick'
The happy ending to the story is that about a month later a couple of people stepped forward and said they wanted to fund the treatment for him.

So he's been on ARVs since last December - and he's doing really well.

Although he has chronic lung damage from having so many chest infections, he's almost a normal child and he got discharged from the clinic here about a month ago to go back to school - that's how much ARVs can change a child's life.

Free will

Not every child is as lucky as Noah though. Every six months we hold a memorial service to celebrate the lives of those that have been with us who have passed on.

On average there are somewhere between 30 to 35 every six months, so double that for the annual figure. The odd one of those may have been on ARVs, but the majority are not.

These kids have their own free will and they have to make their own decisions about their lives and taking these drugs
We lost one teenage girl who was 14 at the beginning of the year.

She just stopped taking the drugs. She used to say: "Nicki, they taste awful, they're bitter, every day they're reminding me that I'm sick." So she decided to stop taking them.

We have also lost another girl recently. She was quite weak already but wanted to give the drugs a try and a sponsor came up. So we let her try them but unfortunately she didn't pull through. The drugs are not always the answer.

These kids have their own free will and they have to make their own decisions about their lives and taking these drugs. I think this is the hardest group to work with - teenagers.

I remember one teenager who just went off to his village, which was very rural and probably didn't have much healthcare.

He decided he was old enough to understand why he was taking them and what was wrong with him. He just stopped taking them.

He had received sponsorship, was taking the drugs and was doing well. He went off to his village, gradually stopped taking them, got sick, came back and was readmitted into the programme and we hoped that he might pick up again. But he didn't unfortunately and he passed away.


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