Anti-Retroviral Drugs for HIV Positive Children

While the country faces the prospect of being broken in two by politicians who are fighting not over ideology or great cause on behalf of their people, but for power, children are being left to die needlessly.

For their sake, I hope politicians will remember the only struggle worth anything, is to give the powerless, the ill, the weak, a chance in life.

My friend, Katherine Long, and I were driving to Tunapuna three days before Christmas. Katherine looked strained, preoccupied, the way mothers with sick children do. But her own young children were healthy, strapped in the backseat of the car for our drive to the nursery.

It was the others that troubled her. The scores who would die unless ‘Pour l’Innocent’, the organisation of which she is a founding member, could do something to prevent it.

You could see their faces in her eyes as she spoke of them - of a seven-year-old girl whose bright spirit was squashed with a disease that robbed her of life, because there was no money to buy the medication she needed; of the four and five-year-old brothers, whose parents died from AIDS, and of their extended family who would not keep them; of the teenager who was thriving because she was helped; of the toddler who blossomed from a sickly child on death’s door to a plump, playful one on medication.

Katherine’s attachment to the children of the Cyril Ross Nursery began when Pour l’Innocent began buying monthly supplies of baby formula, diapers and food for HIV-positive children living at Cyril Ross Nursery, in March 1997.

But the group’s serious commitment - one that is as difficult to walk away from as it is for a full-term pregnant woman to decide she doesn’t want her child after all - came in 1998.

“When we first started our group, the children went to the nursery to die. Now they go there, most of them orphaned by parents who had AIDS, to live. We initiated the antiretroviral combination therapy and were committed to raising $30,000 per child per year, so the child could live,” Katherine said.

“Now we provide treatment for nine children and ten others receive their treatment through a New York-based charity, Hopes Alive. One other child has a private benefactor who finances treatment and another child receives part of her treatment from the Sunny Group.”

Pour l’Innocent has identified 15 other children who critically require tests and treatment.

We were now at the Cyril Ross Nursery and Katherine introduced me to the Nigerian doctor, Nosa Ono-Igeinomwanhia, who, after seeing the way HIV positive children were neglected in our hospitals by AIDS-scared doctors - treats the children voluntarily, going in to see them three to four times a day and is on call 24 hours every day for these children.

Dr John, a US-based Trinidadian doctor who continues his interest with the nursery, told me how the clinic grew from being exclusively for the Cyril Ross children to an outpatient clinic because they were unable to turn away the steady stream of HIV- positive children being brought in by their mothers and relatives.

The children, they said, will be more likely to die of old age, rather than AIDS if a pharmaceutical company keeps its promise to the Government and the nursery, of making antiretroviral medications available at ten per cent of the cost to HIV-positive children and their mothers.

After the doctors spoke, I understood the troubled look in Katherine's eyes. Five children died since May last year.

I stayed on in the clinic. Katherine took me upstairs to visit the children beaming with pride and who were blossoming under treatment, making me ashamed of noticing the ragged state of their surroundings because it was their lives, not the peeling paint, or torn mattresses that mattered.

For several hours I watched Dr Nosa examine children in varying states of illness with tender and fresh eyes, that were not jaded with the misery they saw everyday. I watched him provide hope, no matter how hopeless it appeared.

“Can you get this child medication?” Dr Nosa would ask Katherine. The answer was a commitment to raise another $30,000 this year. She was unable to say “No.”

“How could you say to a child, or the doctor ‘I’m tired of fighting to get the money for you’, knowing if you walked away, or took a break, the child would die?” she said.

In the next room Dr John was doing much the same. The stories echoed one another. There was the mother with a two-month-old baby, who hadn’t realised her first child might have died from AIDS, that she herself might be HIV-positive, that her partner of five years with whom she had been sexually active since she was 14, also might have AIDS.

There was the young mother who looked like a skeleton with skin at 80 pounds, with lesions in her tongue, holding her screaming HIV-positive child to the doctor, patting the healthier child by her side.

“The last time, he had a blood transfusion. That’s why he’s scared,” she said.

“We have to keep the mother alive for the children's sake,” said Dr John.

Nobody deserves hell, misery, suffering, as punishment for being poor and uneducated. Corporations help, fund-raisers are held, the nursery received a donation from the Hibiscus Fund, but it isn’t enough.

Keeping a child alive for three more months, for one more year, with the shockingly expensive cocktail of anti-viral therapy of $30,000 per child per year, is a frightening responsibility, a perpetual feeling of dread.

E-mail Katherine Long to help: pourlinnocent@yahoo.com