Is anonymous HIV testing really anonymous?

November 24, 2005 10:25 PM

Are anonymous HIV tests in New York State really anonymous? In particular, I've heard that clinics/labs that determine that someone is HIV-positive are required to report that information to the state; wouldn't that make anonymous HIV testing not so anonymous after all?
posted by anonymous to health & fitness (9 comments total)

AFAIK, in New Zealand when someone is diagnosed with a notifiable disease, the report only mentions the clinic and area of infection for demographic and epidemiological purposes, there is no personably identifable information. Not sure about New York, but I would be surprised if it was much different.
posted by scodger at 10:38 PM on November 24, 2005

You might look into at-home HIV testing, which if arranged properly can be purely anonymous for all practical purposes.

An at-home positive result could then be verified by visiting a health clinic; a health clinic can provide support services that you may need, like drugs that will keep you alive: you may give up some privacy in order to access those services.

I don't know if NY clinic reporting guidelines are similar to Philadelphia's, but I'll provide it for background anyway.

There is a health clinic in Philadelphia's gayborhood that will give you the option of two free tests. One will give you immediate results, but you sacrifice personal information to take it. The other takes longer to return results, but you don't have to give up your privacy. So watch out.

Otherwise, in Philadelphia, testing itself is (usually) anonymous — check with the tester and make sure! — but a positive result may not be:

"In Philadelphia, only a diagnosis of AIDS is reportable. The number of people who test positive for HIV antibodies is, then, unknown to public health officials and advocates.

"To date, city officials have relied on federal estimates of how many HIV+ people there are in the region, which are based on formulas which project levels of HIV infection from the numbers and demographics of those being diagnosed and reported with AIDS.

"The city's AIDS surveillance system records the name, address, and medical and personal information on each person diagnosed with AIDS. The reports are submitted, under a requirement of the Philadelphia City Charter, by doctors, clinics, and hospitals, and are sometimes identified by city "surveillance officers" from analysis of hospital records and death certificates filed with the city. AACO, which receives the reports, then codes the identities of those whose diagnosis is reported and submits the data to the CDC."
posted by Rothko at 11:05 PM on November 24, 2005

(Which is to say, if you've been tested HIV+ and have developed symptoms of AIDS, your information can be reported. Being HIV+ and having AIDS are two different issues, for this purpose.)
posted by Rothko at 11:11 PM on November 24, 2005

In most states, HIV tests are coded with a number, not a name, and that number is not attached to your clinic record, so even when it's reported to the state (as is a positive chlamydia, gonorrhea, whooping cough, e.coli or syphilis test), it's not attached to *you* per se.
posted by tristeza at 12:05 AM on November 25, 2005

In NY State, it is anonymous. That's the whole idea. It's for real, no nonsense. They understand the situation. I got tested there in 1997, no problems (no HIV, either, but I expected that).
posted by Goofyy at 1:31 AM on November 25, 2005

I work at the State Lab in Massachusetts. I don't work in the HIV lab itself but I do know that there are no names on anything there - It's all done with numbers.
posted by soplerfo at 5:29 AM on November 25, 2005

Anonymous is anonymous in MD, although an epidemiologist will try to talk to you in the clinic where you get your results if you test positive. But they won't know your name unless you tell it to them.

If you're getting tested anywhere where you are required to write down your name (as oppossed to an invented "unique identifier"), then you are getting tested confidentially. This is kind of a misleading category of testing since all medical tests are essentially confidential. The local health dept has access to confidential test data.
posted by OmieWise at 5:38 AM on November 25, 2005

In NY state, anonymous testing means strictly anonymous. Your name is not part of the equation; you are assigned a number. The downside is that you will not get a print-out of your results (they will show you on a computer screen). If you are positive, your statistics are reported to the state (age/race/sex and the like), but your name is still never used/spoken/written down.

There is also the option to do confidential results, which confidentially associates your name with the results and will give you a print-out (and I *think* makes you eligible for long term counseling/services/etc). This is as confidential as any health record; only Dept. of Health folks can see it.

If this is more than a hypothetical, and if you are going in NYC, I highly recommend going to one of the rapid testing locations (I went to the one in Chelsea: 303 Ninth Avenue @28th Street), and getting there 15 minutes before it opens in the morning. It is so fast (you have the results in an hour) and easy and FREE and anonymous. There is really no excuse!
posted by unknowncommand at 7:45 AM on November 25, 2005

dittoing that anonymous is anonymous. when you sign the informed consent form "a signature is required"--but it doesn't have to be your real name. Whereas with confidential, they get all your info; it's the same as getting your thyroid hormone level tested.

Be sure to clarify whether the test you're receiving is Anonymous or Confidential. A test at your primary care physician's office is usually confidential only (it will be in your chart); if you want to be anonymous, get a referral to a clinic that gives anonymous testing.

Oh, and if you test Confidentially, the results will be in your chart. So your insurance company could potentially have access to it, but only if they get a signed release from you. And mental health & aid/hiv info will not be part of a "complete medical record" information release; you have to mark/sign a separate section to okay releasing that info to them. Also, you can't be not picked up by an insurance company for just getting tested.
posted by neda at 7:48 AM on November 25, 2005