Faux Escandale in Chile-redux

I got a call yesterday afternoon from al-Jazeera TV in English for a live appearance on their nightly news show for a segment about a pumped-up scandal in Chile related to AIDS. They tracked me down through my book on the topic, and I had the goofy experience of sitting in a chair in a Times Square studio all by myself surrounded by camera equipment and talking to a disembodied voice coming through on an earpiece. You’re supposed to focus on the eye of the camera so that you seem to be engaged in direct conversation with the anchor (actually 200 miles away), which is bad enough, but also you can’t see him frantically signalling you to shut up when the four minutes are over. I ended up talking to myself.

The lead-in to this piece on the failure of Chilean hospitals and medical labs to inform some 2,000 people that they are HIV-positive [see Nov. 28 post below] was a testimony by a Chilean guy who acquired the infection eight years ago and had a lot to say about the experience. Unfortunately, it wasn’t very coherent. He lashed out at the government, worried about gains that were being reversed, said people suffered from stigma and discrimination, and then lashed out at the government again. The overall impression was that the negligent public health system had toyed with people’s lives out of a combination of indifference and bloody-mindedness and that right-thinking, decent folks should move in promptly to right all wrongs.

Ah, would that it were so simple. I am reminded of the late Tanta’s lively posts on CalculatedRisk.com about the intricacies of the mortgage industry and the cheap shots being scored on the current meltdown by people who should know better. One of her targets was Sheila Baer at the FDIC who is everyone’s current heroine because of her bold plans to Save the Sinking Homeowner. What would Tanta have to say today about Monday’s news that half of the people who got refinancing help are in default again?

But I digress. The problem with the HIV+ guy’s discourse, I repeat, is that the failure to inform people of their HIV infection stems directly from mechanisms built into the system to protect people like him. Hospitals and clinics were prohibited, first by practice and later by law, from chasing after unwilling patients to force their seropositive status down their throats in front of neighbors, relatives and employers. We may think it’s best to know, but once you empower the health department to track down those testing positive, confidentiality goes out the window even if everyone’s intentions are pure, which they frequently are not.

The abuses that occurred in the early years of the epidemic in which people’s lives were destroyed by public revelations while no treatments were available forced the system to shape up and treat clients with more respect. Now, it is true, times have changed, and life-saving treatments are available. So we should reconsider the conditions and figure out a way to get more people into the testing process and to make sure they know the results once they take that step—by use of the saliva-based rapid tests, for example.

One really bad idea, however, is to repeal the protective laws of the 1990s and return to the big-daddy-state approach that the government started out with—under General Augusto Pinochet, I might add—in which people were considered public health menaces and tracked down by nurses in white hats. Given the reigning logic, I anticipate a move to force people to reveal names of sexual contacts as well, thereby encouraging everyone to run as fast as possible in the opposite direction from government-sponsored campaigns about AIDS or any other damn thing.

The HIV+ fellow who volunteered his story last night should be applauded for his courage and his willingness to contribute something to the cause. But the organizations that instructed and coached him have failed to provide him with a sensible analysis, and with their scattershot discourse they run the risk of plugging both themselves and the rest of Chilean society in the foot. It’s dramatic and laudable when people stand up and refuse to be victims, but after a certain number of repetitions that you’re refusing to be a victim, you reinforce victimhood. Simply saying that everyone involved is doing a terrible job has opened the door wide to Chilean conservatives who want to turn the clock back and restore the coercive power of the state in the name of public health.