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PEPFAR Advocates Hope 2008 Legislation Brings New Understanding of Patients' Rights


Congressional renewal of PEPFAR, President Bush’s Emergency Plan for AIDS Relief, repeals a travel ban that was enacted in 1986 when it was believed that HIV-infected travelers intrinsically posed a danger of infecting the general public. Over time, attitudes have changed with a greater understanding of the sexually transmitted disease. But it took a persistent lobbying effort by a coalition of 160 activist groups to convince legislators that the laws had to change. Rachel B. Tiven of New York-based Immigration Equality helped lead the repeal campaign in Congress. She says that lifting the ban sends a particularly strong signal to many Africans who until now have been excluded from entering the United States.

“The impact has been tremendously negative. It’s very difficult for people from Africa to enter the United States. There’s a high level of suspicion about the HIV status of people entering from Africa. The presumption really reflects a set of stereotypes and biases that people who are HIV-positive find that they can’t attend medical conferences. They can’t attend activist conferences. They can’t visit the United States to see family or to go to a wedding or to go to school if they are HIV-positive. And it really just sends a message that is completely counter to what the United States has been claiming it’s interested in propagating on the continent,” she said.

The 2008 PEPFAR legislation elevates earlier US funding of AIDS treatment, medical services and research programs around the world from a sum of $30 billion over five years to $50 billion through 2013. However, a significant portion of the increase will fund campaigns against malaria and tuberculosis, two other afflictions widespread across sub-Saharan Africa that physicians say can compound and weaken the already fragile health of AIDS victims. Tiven notes that in repealing the travel ban, legislators have taken major steps to remove discrimination, deal more honestly with how HIV/AIDS is spread, and raise priorities on curbing the transmission of other communicable diseases like TB, which she notes can be readily carried across borders.

“We no longer are subject to the myths and misinformation that really gripped the public consciousness in the late 1980’s and early ‘90’s, and that the kinds of anachronistic misunderstandings about HIV, how it was transmitted, are things that in the US are, thankfully, something in the past. We know that you don’t get HIV sitting next to somebody on an airplane; you don’t get HIV from sharing a bathroom with someone. These reflect a really ignorant and anachronistic set of beliefs. That’s what made it possible for the US to finally change its policy, that Congress recognized that we know that that’s not good public policy,” she said.

When President Bush signs the 2008 PEPFAR bill into law, HIV-positive foreign applicants will no longer be subject to what Tiven calls discriminatory exclusion, but will still be subject to US Department of Health and Human Services (HHS) oversight on an individual case basis of the possible risks they pose. Tiven cautions that it is fallacious to think that a tightening of government surveillance of AIDS patients will serve to protect the public from an added safety threat.

“We know in fact that the public health is not benefited by a series of measures that encourage people to hide or fail to disclose their status or that create a situation in which people who are already in the United States are reluctant to seek treatment because they are concerned about the impact that will have on their immigration status. We know that encouraging people to be open and honest about their health care is the way that we avoid further transmission of the disease,” she says.

Tiven points out that historically, US immigration law is concerned with public health in terms of diseases that are easily transmissible in travel and in the general population. For example, she says, “tuberculosis is a long-term concern for the immigration system, and historically, that has been a disease that has been on the list for a long time. And we’ve seen in recent years concern about TB travelers not being careful and responsible about their behavior when they travel the globe. But tuberculosis is an airborne disease. HIV is not.”

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