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Chile's Lapse in Notification Leaves HIV-Positive Unaware

By Joshua Partlow
Washington Post Foreign Service
Saturday, November 22, 2008

The latest face of Chile's HIV crisis is a woman with no face at all.

Hidden behind dark glasses, her head swathed in a shawl to hide her identity, the 25-year-old woman known as "Lorena" or "L.C.C." filed a lawsuit in the city of San Antonio this week, flanked by a congressman and surrounded by reporters. Her accusation: that public health officials did not inform her she had contracted HIV, which resulted in the death of her 7-month-old daughter, who was also infected.

"The only thing I ask for is justice. They can't bring my daughter back to me with money," she told a reporter. "What enrages me is that these people are walking around with impunity for life, knowing that they did something horrible."

L.C.C. is among a ballooning number of people in Chile who were not told they had tested positive for HIV and therefore were denied potentially lifesaving treatment. Officials said this month that the public health system had failed to notify 512 people of their status and that private health centers had not contacted more than 1,000 others.

The scandal, which began with the news that a hospital in northern Chile had not told patients they were HIV-positive, led to the resignation of Health Minister Maria Soledad Barria last month, plans to reform the notification system and a recent warning that the government could declare a "health emergency" if the hundreds of people who still do not know they have the virus are not found and told quickly.

The situation has also prompted a vigorous debate about public health, sexuality and the politics of HIV.

"Who is responsible for this situation?" Teresa Valdés, a sociologist and board member of a women's rights organization, wrote in an op-ed posted on the El Mostrador Web site. "Is it the official of the laboratory that delivered the result, the health center where the test took place . . . or a society that denies sexual diversity, that has discriminated for years against homosexuals and that drapes a cloak of silence over the sexuality of its members."

Some blame the infected. Marcela Contreras, a prominent hematologist, told the Cooperativa radio network that the scandal was "out of proportion" and could damage a quality blood service system in Chile. "There is a responsibility of the patients that went to take the HIV test because many of them did not give their correct addresses or telephone numbers."

Others have called the lack of timely notifications an inexcusable failure of the health system. A joint statement issued by two groups that deal with HIV, Vivo Positivo and Asosida, called the situation the "worst health crisis the country has faced in recent years" and "a flagrant violation of human rights and the right to life."

An editorial in La Nación newspaper said the stigma and secrecy surrounding HIV in Chile -- a socially conservative and predominantly Roman Catholic country that in 2004 became one of the last in the world to legalize divorce -- contributed to the current crisis. "Sexual promiscuity is a reality that must be acknowledged, regardless of philosophical or religious views. Thus, prevention campaigns must be more explicit than they currently are when it comes to the risks and alternatives for protecting yourself against AIDS," the editorial said.

After the HIV revelations became public, the government rushed to notify those effected, a response that has also come under criticism. Some reported that workers showed up at their jobs and told them they had the virus in front of their colleagues.

Ivan Valenzuela, an HIV-positive transvestite from Valparaiso known as Scarlett, told El Comercio newspaper that health officials arrived at his house this month and told him that the results of a test he took in 2006 had been "altered." Valenzuela, who is filing a lawsuit because of his experience, said that now "everyone knows me, I lost my job, I lost everything."

"I don't understand how they found me now and not before," Valenzuela said.

The government has named a new coordinator of the National AIDS Commission, Anibal Hurtado, and there are discussions about legislation to improve the HIV notification system. Hurtado suggested that police databases might be used to find and notify infected people.

"It's always difficult to take responsibility," Hurtado told reporters. "But I want to take it."

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