Julie Davids

Quacks Like a Barrier: Opening doors to testing could construct new obstacles

About 25% of people with HIV in this country don't know they've got it.

And there's been a flurry in recent months about doing something about it, including new proposals about HIV testing and tracking, like the aggressive strategies aggressively proposed by NYC's Health Commissioner Freiden and draft guidelines for testing in health care settings from the Centers for Disease Control.

So that's good, right? Well, maybe not.

Frieden's ideas, which would add additional surveillance measures in the city that already collects the most data on HIV+ residents, and which would eliminate pre-test counseling and written informed consent, has been widely opposed, though sometimes supported, by AIDS community members.

Both Frieden and CDC are claiming that counseling and informed consent present barriers to physicians and other health care workers. But top docs like Donna Futterman in the Bronx have shown it is possible to streamline counseling while meeting all current requirements, and have rapid-fire strategies for training and compelling docs who try to shying away from talking about HIV and those messy sex-and-drug topics. And across the country, transmission of HIV from moms to infants during pregnancy and childbirth plummeted during a decade of purported obstacles, thanks to counseling and voluntary testing that helped get women to treatment.

Many AIDS orgs point out that the time around testing is one of the best opportunities to get key information to people at risk, and NYC's own CHAIN study shows that people test positive without good counselors connecting them to services and support don't get into care at all for years and years - meaning they are more likely to get sick from things that could be prevented, and that they're not getting HIV meds that can preserve their immune system. And in NYC - and most parts of the country - they are more likely to be people of color, who may have gotten less-than-stellar treatment in the medical system.

So what if counseling-lite testing means more learn their status but less have help finding their way to appropriate care upon hearing the bad news? It remains to be seen, though Frieden's promising improvement...

What's more, CDC is pushing a barrier all their own - the troubling, time-consuming, and poorly designed requirement called Program Evaluation and Monitoring System (PEMS) that could make it a whole lot harder for state health departments and community program to get the work of HIV prevention and testing done.

PEMS mandates the collection of lots and lots and lots of details about your sex life, your drug practices, and other personal stuff before you get to have an HIV test from these programs. In most other contexts, this would be called research, and you'd have informed consent and community oversight - and cash-strapped community groups would get adequate compensation for the burden of training and quality assurance needed.

Or it might even be called hypocritical, because the very same program models that CDC has pushed communities to adopt say that you should build a rapport with people, instead of busting right into tricky topics mandated for every conversation by the PEMS form -- like how many acts of unprotected anal intercourse they've had, or how long have they been shooting up Botox. PEMS say, oh no baby, forget that rapport stuff, tell it to me all right here and right now on the first date, and then we'll put it all in a database in this local office with no real requirement for data safety.

I'd say that's probably not the best way to reach the 25%, many of whom may have have avoided HIV testing because they're struggling with their own feelings about the tricky issues that PEMS is ready to grill them about and put in their permanent file, and who come from communities that have pretty compelling historical reason to suspect government programs.

So let's review.

CDC and Frieden, like the rest of us, want to help people who are HIV+ learn their status and get into care. But they want to get rid of written informed consent and some counseling requirements, even though these things have not actually been shown to be in the way, and have been shown to be a good way to help find people who are HIV+ and get them into care.

CDC, like the rest of us, wants to expand access to testing across the country, and says that they have to remove barriers to testing to do this. But they're building a whole new barrier with this cumbersome surveillance scheme that tries to do research on the cheap, and that contradicts the very programs they made communities adopt in order to expand access to testing.

Some would have you believe that opponents or critics of these policies are civil libertarian wack jobs who put privacy fetishism over public health. Label as you will, but I'd say that some good, coherent answers to a bunch of questions are needed to make this all add up to a whole plan.

P.S. As a side note, CHAMP's community organizer / rebel-rock-icon Sonny Suchdev of Outernational whose opening words at Monday's immigrant rights rally in NYC were posted by conservative meanster Michelle Malkin, was also caught wearing a t-shirt, further proof of the vast conspiracy to destroy America as we know it . Good work Sonny!

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Posted at 10:26 PM, Apr 13, 2006 in
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