Post updated June 19

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Post updated June 19

As global health leaders from around the world met in Seattle for the first day of the Pacific Health Summit 2009, one speaker was notably absent.

Paul Thorn, a British activist scheduled to speak today, said he was denied a U.S. visa because he is HIV positive. Thorn, project director of The Tuberculosis Survival Project, was scheduled as to participate in a discussion about the TB battle from the front lines.

The summit focuses on tuberculosis this year, drawing top global experts from government health authorities, research institutions, NGOs, pharmaceutical companies and private foundations.

In a written statement read aloud during that discussion, Thorn apologized for his absence and expressed his disappointment.

“The U.S. government actively discriminates against people who have been tested for the HIV virus and have been diagnosed HIV-positive,” he said in the statement read by Lucy Chesire of the Kenya AIDS NGO Consortium.

Thorn said his application was turned down despite the interventions of Senator Patty Murray and Congressman Jim McDermott and appeals to the U.S. Consulate in London.

The U.S. policy gives people two choices: to lie on the application, committing a felony, or to be honest and have the visa rejected “because you are considered an undesirable person and unfit to enter the U.S.,” Thorn said.

“I don’t want to be either, but being an undesirable seemed like the lesser of the two evils, so I decided to be honest.”

Thorn said the policy is wrong because many people who are unknowingly HIV-positive enter the U.S. every year. “The U.S. ban on people with the HIV virus entering the U.S. is one more reason why someone who believes that they may be HIV positive would just rather not know, putting themselves and others at risk of ill health and possibly an early grave.”

If the U.S. wants to demonstrate leadership on HIV/AIDS and global health, through hosting such international health conferences, “then they need to accept that non-U.S. citizens with HIV are going to need to be there and participate.”

He called on the Obama Administration to change it and others to keep up pressure to that aim. Here is a more in-depth analysis of that policy.

“I think it’s outdated,” said Darryl Johnson, a retired U.S. ambassador participating in the health summit. Johnson added, though, that he didn’t understand why Thorn would not have been granted a waiver.

Thorn created the TB support project after fighting HIV and multi-drug resistant tuberculosis himself. He has been free of TB for more than 12 years after undergoing treatment lasting three years, Thorn said in this interview. He was infected with TB from a nearby patient during a hospital stay in the early 1990s.

(Update: Thorn confirmed in an email message to me June 19: the rejection “wasn’t because I had MDR-TB, that was back in 1995 and has been cured. The visa waiver form also specifically asks if the TB is active or not. I was rejected on the visa waiver because I had to tick yes to having a communicable disease as I am HIV-positive.)

One of the key topics for the Seattle conference is the deadly combination of tuberculosis and HIV/AIDS. People with HIV are more susceptible to developing TB, and TB is the leading cause of death among people with HIV/AIDS. In fact, cases of co-infection are as high as 70 percent in some countries. A mutated version of TB that resists most antibiotics spreads most quickly among people with weakened immune systems.

Many deaths could be prevented right now by merging the two forms of diagnosis and treatment, which remain separate in most countries, said Laurie Garrett, senior fellow for global health at the Council on Foreign Relations.

“Shame! Shame! Shame!” Garrett scolded health leaders at a conference kick off dinner Tuesday night.

Tests should be worked up for both diseases “regularly, in the same place by the same people,” she said. Instead, they are handled by different departments, with many cases falling through the cracks, and patients spreading TB in waiting rooms when they pick up their HIV medicines. The two diseases are much more destructive together than alone.

Tuberculosis is the number one killer of people with HIV in Africa. In Lesotho, 70 percent of TB cases are co-infection with HIV/AIDS. More coverage on that is here.

If TB diagnosis and treatment were integrated with HIV/AIDS, that alone could make more difference than all “these new drugs you’re talking about,” Garrett said.

In the Global Fund to Fight AIDS, Tuberculosis and Malaria, most grants go to one designated disease or the other, she said, and the U.S. President’s Emergency Plan for AIDS
Relief (PEPFAR)
does not adequately fund or track TB.

“How is it morally acceptable for American taxpayers to fund one disease and allow another to run rampant and kill the people they were trying to save with the funding?” Garrett asked.

Leading disease experts from the Center for Global Health Policy will call on President Obama and Congress to mount a concerted and comprehensive response to the deadly combination of HIV/AIDS and TB at a Congressional briefing on June 25.