THE HIV WATCHERS

is the title of an interesting, issue-raising article in last week's Village Voice by Aina Hunter, which can still be found on the Voice's site at VILLAGEVOICE

To summarize with a few quotes from the article, AIDS activists aren't pleased with the Department of Health's draft of a bill which would change the way New York "handles the medical records of people with HIV/AIDS." The new bill would also "simplify the process health care providers must follow before testing for HIV." Chanting "Our bodies, our lives, train the doctors, nix the spies!", 40 representatives of advocacy groups including GMHC and the New York Civil Liberties Union marched out of the community forum to indicate their disgust with the provisions in Dpt of Health Commissioner Thomas Frieden's new bill.

""Nix the spies" was a reference to one of the most contentious proposed changes to the state's public-health law. As it stands, health care providers are required to report the names of people with an HIV/AIDS diagnosis to the health department, along with medical data such as patients' current viral load. Frieden would like to take that section of the law a step further with an amendment that would require health care workers to provide additional information to the health department on request, including patient contact information.

The other controversial change would eliminate mandatory pre-test counseling, which, in New York, includes a signed consent form that also enumerates the benefits of getting tested and the legal protections available to fight possible discrimination. Every blood sample sent to a lab must be accompanied by this form, and medical professionals call the paperwork burdensome. If Frieden's bill becomes law, informed oral consent would be enough to permit testing."

Health officials who support the bill claim that it would enable clinics to perform more tests in less time (because of the reduced counselling involved in the new bill) and hopefully destigmatize the test so that people would be less afraid to take it. I just went to a new doctor who strongly encouraged me to take the test and when I told him I would flip out waiting for the results, he even offered me a few Xanax to calm me while waiting on the results. He did NOT offer the information that my test results would be forwarded to health officials if my results were positive. Inclusion of my status and contact information woud STIGMATIZE the test for me. Thanks, to this article, I now know to take only anonymous AIDS tests. Does anyone know where the anonymous tests are offered? I'm just DYING to know!

"Everyone may not need to get counseled every time he or she is tested, and some advocates agree that it makes sense to let hospitals and clinics set their own policies. Still, there's something unsettling about the thought of health department officials dropping by your house to find out why you haven't been taking your meds."

Well, there's also something unsettling about dying from AIDS, because you may be--as this article claims are two common causes of failure to maintain the complicated regimen of meds--mentally ill or in unstable-housing. Or, the article failed to mention, a party boy or girl whose "party meds" dictate their schedules more than AIDS meds do. Shouldn't these people be helped? Is knocking at their door a way of helping them stay alive? I'm so scattered right now due to allergy season that I sometimes can't remember to even take my Claritin. Can you imagine how hard it would be to follow a complicated regimen of protease inhibitors if I were homeless or mentally ill? (OK, OK so you don't have to imagine the mentally ill part in my case.)

The $20,000 question is Do you trust the government with knowing your HIV status? Once your info is on file, what would happen if NY government took as crazy a turn as the government in White House has? I certainly don't want to see concentration camps for the HIV positive, but might the government be trying to take steps to halt an epidemic of an often fatal illness? Am I being naive in thinking that a health department might actually have sincere motives in slowing the disease's progress? But Frieden's motives are already under fire in light of his recent funding cuts to outer-borough outreach programs. Then again, I don't know what budgetary constraints he's under from his superiors. There are major AIDS-funding cuts nationwide.

Frieden should not have, as Kacie Winsor from the New York AIDS Coalition put it, "drawn this up with lawyers in a room somewhere and then staged these community forums as window dressing." Kacie goes on: "There needs to be an honest partnership. Let us all sit down and figure out the best ways to reach these goals." Absolutely agreed. But Kacie also feels that Frieden no longer cares about HIV testees' confidentiality because it's no longer a gay white male's disease. This seems outlandish to me. Since AIDS is the # 1 killer of young adult black women, It hasn't been only a gay white male's disease for well over a decade, so why would this begin to start influencing policy now? The government may view gay white males and blacks and AIDS victims all as second-class citizens, but if (ha!)) that's the case, why would it shift it's policy to favor one second-class group's confidentiality over another?

It wouldn't be the first time I'd disgreed with the advocacy groups, but it certainly is scary to envision one the forum's
audience members who claimed, "One day you'll have the HIV people on the Internet, just like you have the criminals now." And you'll recall the recent news about the Candian guy who went on a killing spree of ex sex-offenders whom he'd located on the net.

WHAT DO YOU THINK?