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Slowly, Africa Starts to Care for AIDS Children


By Sharon LaFraniere, New York Times

Lesotho

March 8, 2006


John, aged 9, whose parents died of AIDS related TB, sits with his grandmother Alima Niymkuat in her home in Tanzania

Staff members of the new pediatric AIDS clinic here are used to seeing sick children. But rarely had they seen one so ill as the silent, twig-thin youngster led in by his grandmother one hot morning in February. 

The boy, Tsokotsa Lepheane, age 7, weighed 36 pounds. His hair was thin and patchy, his eyes dull. He stripped to his royal blue underpants slowly, with obvious effort, revealing emaciated limbs and a torso tattooed by a blotchy rash.

"Wow," said one nurse, out of his hearing. Another murmured, "Look at him." 

Less than a year ago, Tsokotsa would have been destined to follow his parents, both buried in the last five years after suffering from AIDS-like symptoms. In Lesotho, as throughout much of sub-Saharan Africa, children with AIDS were generally considered a lost cause. Treatment, to the extent it existed, was limited to adults, for whom antiretroviral therapy is cheaper and easier.

Now, that is slowly changing. Through some charitable foundations, pediatric AIDS medication is available for as little as $200 a year, half of what it used to cost and only $60 more a year than adult medication. Governments, international agencies and private charities have begun to train the region's ragtag health care corps to treat children. 

Here in Lesotho (pronounced lay-SOTE-ho), two pediatric AIDS clinics have opened in the capital in the last year, and seven hospitals have begun to offer antiretroviral treatment.

Still, only a few children get help. Perhaps 8,000 need antiretroviral therapy, government health officials say; a mere 261 were receiving it at year's end. 

Death comes swiftly for those who go without. Half of all untreated H.I.V.-positive infants die before the age of 2 for lack of medication that can produce transformations seemingly overnight. With medicine, some American infants infected since birth have survived into adulthood and become parents themselves.

"Children do very well on treatment," said Chewe Luo, the senior H.I.V. adviser for Unicef. "We just haven't stepped up to the plate to make sure they get it."

There are several reasons. Fewer children are infected - an estimated 2.1 million in sub-Saharan Africa, compared with 25 million adults. Specialized and costly tests are needed to determine whether a child under 18 months is infected, although treatment can begin based on symptoms alone.

Children are also more complicated to treat, partly because their medication must be constantly adjusted as their height and weight change. And pediatric drugs cost more than adult medication - until recently, up to three times as much. 

But the biggest hurdle facing children in need of treatment, Dr. Luo maintains, is that they are children. 

"Their voice just hasn't been there," she said in a telephone interview from New York. "Countries were much more focused on the adults who were dying. Nobody stopped to think about children. It is only in the past year that pressure has mounted to treat them."

In Lesotho, a nation of 1.8 million encircled by South Africa, more than one in four adults is believed to be infected with H.I.V., the third highest infection rate in the world. Treatment for adults began only in November 2004. Treatment for children followed last April. 

Caseloads have been swelling ever since. But with an average of one doctor for every 20,000 people, patients sit shoulder-to-shoulder, sometimes waiting more than a day to be seen at a hospital. Health care workers continue to leave for better-paying work in South Africa, Britain or elsewhere.

In all Lesotho, there is only one government-paid pediatrician. Recruited from Congo, he does not speak the local language, Sesotho. One health care district south of the capital lost a quarter of its nurses last year. 

"Everybody is running away," said Maneo Tsoaeli, the head nurse of the government-run 132-bed Quthing Hospital, on Lesotho's southern border. "The situation is so pathetic. This is why when you come back, I myself may not be here." 

Lesotho officials have yet to treat AIDS like the national emergency it is, said Tim Rwabuhemba, Lesotho director for the United Nations AIDS agency. But other experts praise the government's determination to battle the epidemic, and foundations and charities are beginning to flock here.

The World Bank and the Global Fund to Fight AIDS, Tuberculosis and Malaria are pouring millions into the national budget for AIDS programs. The Clinton Foundation persuaded one pharmaceutical firm to halve its prices for pediatric AIDS medicines, and is donating the drugs to Lesotho and other nations. 

In July, the foundation opened a new pediatric AIDS center at the busy Queen Elizabeth II Hospital in Maseru. With $2 million from the pharmaceutical firm Bristol-Myers Squibb, Baylor College of Houston built another pediatric center and is operating it with financial help from the Lesotho government. 

Doctors Without Borders is training nurses in 14 clinics, hoping to demonstrate that AIDS care need not be centered in hospitals nor depend so heavily on doctors. 

Experts say such training is the only way to offset the huge loss of trained medical workers. Nurses must fill in for doctors and nurse's aides for nurses; everyone from retirees to AIDS patients themselves must spread the message that treatment is now available. 

In Quthing, only 13 children have begun treatment since an antiretroviral clinic opened at the red brick hospital in July. Many more could probably be traced through the prenatal clinic next door, which treats a steady stream of H.I.V.-positive pregnant women who may infect their newborns during pregnancy, delivery or breast-feeding. 

Keneuoe Chabeli, the prenatal clinic's counselor, urges women to bring in their newborns to be examined. "But I never see them again," she said. 

Ms. Tsoaeli, the hospital's head nurse, said no one had time to follow up with new mothers. "We know we are not giving proper service," she said. "Definitely not. We need manpower."

For Dr. Roland Monika, the government's sole pediatrician, a recent Thursday was typical. The waiting room at the pediatric AIDS clinic in Queen Elizabeth II, the nation's premier hospital, was packed by 8:30 a.m. He also needed at least to check on 42 children in the inpatient ward, most of them H.I.V.-infected, some squeezed three to a crib. Another ward brimmed with newborns. 

Finally, a white wooden bench for outpatients was packed with seven more sick children and their adults, who plucked his sleeve at every opportunity.

By 10:45 a.m., Dr. Monika's frustration spilled over. "I can't deal with the outpatients who are stable," he said loudly in the direction of the bench. "I must see the patients who are very sick."

"Please, come back tomorrow," he begged. "Please."

Yet it was far worse seven months ago, Dr. Monika said, when he had no medicines for children with AIDS. An average of three children a day died then, he said, compared with three to seven a week now. Amid stopped-up sinks, broken cribs and grandmothers napping on the floor, he pointed out recovering patients. In nine months, 105 children have been put on treatment.

Mamoliti, a 13-year-old sixth grader, is one. When she was admitted to the hospital last April, she had already lost her mother, her father and her 2-year-old brother, all apparently to AIDS. She knew she was infected.

"I was very sick," she recalled, during an outpatient visit. "I was afraid because at that time there was no medicine to drink and no tablets. But after being here, I was very better, better, better, better." 

Lying in a hospital bed has given way to math classes, soccer and leaping over puddles, thanks to the little pills she carries in a pink plastic purse. When her grandmother was unable to escort her, she made the long bus trip to the clinic alone, waiting all day for Dr. Monika and a fresh supply of pills, nervously asking the time so she would not miss her 6 p.m. dose.

By the time 7-year-old Tsokotsa showed up at Maseru's other new pediatric clinic, in early February, pitifully thin and rash-covered, he had been seriously ill for about five years. His mother died in 2000, his father in 2003. His grandmother, Mamohau Lepheane, 67 and half-blind, sold homemade brooms for the $5 bus fare to the clinic. She said Tsokotsa had to stop repeatedly to rest on the walk from the bus stop to the clinic.

Tsokotsa quit school in 2004, she said, too sick to study, and began avoiding other children. In recent weeks, he had begun to refuse food, drinking hot water instead - medicine, he called it - to ease the pain in his throat and chest.

Between the curled covers of two notebooks, health care workers had documented Tsokotsa's suffering: pneumonia, tuberculosis, vomiting, skin rashes, fevers, malnutrition, diarrhea. But not one had recommended that he be tested for H.I.V.

Dr. Lineo Thahane, a 30-year-old American-trained pediatrician sent here by the Baylor College of Medicine, quickly determined that Tsokotsa was in the final stages of AIDS. She found enlarged lymph nodes, an enlarged liver, scabies, ringworm, evidence of chronic lung disease and a fungal infection of his esophagus. His CD-4 count, a measure of the strength of his immune system, was 21. A normal count is 500.

Tsokotsa's voice was so soft he could barely be heard between coughs. "I feel tired," he whispered. "I don't want to play. When I wake up, I drink some medicine and after that I just do nothing. I sit all day." 

"I want to go back to school," he said. "But only if I get well." 

Seven days later, it appeared that he might yet have that opportunity. A week of treatment for his opportunistic ailments had the clinic's nurses marveling at his improved appearance. He began antiretroviral therapy on his second visit. 

Dr. Thahane said children like Tsokotsa were a sign of progress, where there was none before.

"It is very difficult to see such sick children," she said. But, she added, "I ask myself: what would happen to these kids if we weren't here?"


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