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‘We have a lot of work left to do’: Child AIDS advocate

The next great milestone we must achieve in the story of AIDS is ending mother-to-child transmission,” HIV-positive Ei Ei Phyu, who lives at the hospice with his HIV-positive mother, sleeps in a hammock at the HIV/AIDS hospice founded by a member of the National League for Democracy (NLD) party in the suburbs of Yangon May 26, 2012. Their plight demonstrates the painful limits of democracy in Myanmar. While the government is pursuing reforms that promise to overhaul its health ministry and other institutions, the process is too slow to bring change to its most destitute. There are few better examples than AIDS sufferers, who due to a combination of poor education, social stigma and bureaucratic mismanagement are isolated in clinics, cut off from society.

Damir Sagolj/Reuters

Despite the availability of cheap, effective drugs, only one in four HIV-positive children worldwide is receiving treatment.

"It's a scandal that children are treated at half the rate of adults," Philip O'Brien, executive vice-president of the Elizabeth Glaser Pediatric AIDS Foundation, said in an interview at the 19th International AIDS Conference in Washington.

He said that, amid all the bold talk of an AIDS-free generation, the fact that mother-to-child transmission of the virus remains commonplace and treatment of children all-too-rare is a sobering counterpoint.

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"Have we failed children? If not a failure, the least you can say is that we have a lot of work left to do," Mr. O'Brien said.

According to UNAIDS, 2.5 million children are living with HIV-AIDS, out of a total of 34 million HIV people worldwide.

Last year, 330,000 babies were infected during birth or breastfeeding. This is despite the fact that mother-to-child transmission is entirely preventable, and costs a pittance. (A year of treatment costs about $125 in low-income countries.)

New infections are declining – 10 per cent last year alone – "but not enough, not nearly enough," said Chewe Luo, a Zambian pediatrician who is an HIV-AIDS program adviser for UNICEF.

The problem is not a lack of medication – after all, everyone wants to fund programs for babies and moms – it's identifying those who need treatment and getting them to clinics to be tested and treated.

Almost 100 per cent of women get some pre-natal care, while in some hard-hit African countries, as few as one in four HIV-positive women get HIV treatment. Research shows a significant percentage of patients are lost each time there is an additional test, an extra pill, an extra visit to a clinic required.

"We really need to simplify programs," Dr. Luo said.

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Ideally, what is required is rapid tests, immediate initiation of treatment and a one-pill-a-day regime. Efforts also need to be concentrated in the 22 countries where almost all the infection of babies occur.

Additionally, treatment should be available at every step of the pre-natal and post-birth journey, she said.

Research shows that 10 to 25 per cent of babies are infected during labour, 35 to 40 per cent during delivery, and 24 to 40 per cent during breastfeeding, all of which is preventable with available medication.

Once a baby is born HIV-infected, they can be treated too but intervening quickly is essential. Because of their underdeveloped immune systems, more than half of HIV-positive babies who are untreated die before age two.

"We often hear that AIDS isn't a death sentence any more," Mr. O'Brien said. "But if you're a child and you don't get treatment, it is a death sentence." (By contrast, delegates heard that a 25-year-old who is treated promptly after diagnosis can expect to live an additional 53 years for a man and 58 years for a woman, an almost normal life expectancy.)

There are several impediments to children getting medication, including stigma and the high rate of maternal mortality. More than 420,000 women die in childbirth each year in the developing world, and orphans often get shunted off to relatives. (Bear in mind that, worldwide, there are an estimated 16 million AIDS orphans, children who have lost one or both parents to the pandemic.)

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There are also some important technical issues, namely that there are few pediatric formulations for anti-AIDS drugs.

"When Elizabeth's daughter died, the pediatric drugs weren't available and they still aren't. It's unconscionable," Mr. O'Brien said. (Elizabeth Glaser was infected by a blood transfusion and subsequently gave birth to two children, both of whom were infected with HIV before drugs were available to prevent transmission. She began the foundation after the death of her daughter Ariel.)

While scientists and advocates alike are divided on whether it is possible to end the AIDS epidemic in the foreseeable future, one thing they agree on is the starting point.

U.S. Secretary of State Hillary Rodham Clinton told conference delegates that, in her definition, an AIDS-free generation begins "when virtually no child anywhere will be born with the virus." Second, when children will be at significantly lower risk of being infected as they grow into adulthood and, finally, when everyone who is HIV-infected "will have access to treatment that helps prevent them from developing AIDS and passing the virus on to others."

Diane Havlir, chief of the HIV-AIDS division at San Francisco General Hospital and co-chair of the conference, had the same starting point.

"The next great milestone we must achieve in the story of AIDS is ending mother-to-child transmission," she said.

This will require more than promises and sympathy, but a lot of concrete action building an infrastructure that will make treatment accessible and affordable, said Jennifer Furin, an infectious diseases specialist with the Stop TB Coalition.

"Children need teddy bears, but more importantly, they need medications," she said.

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