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Author Topic: Who All Really Knows?  (Read 715 times)

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Offline WindySkies

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  • Posts: 106
  • Tested + 10/11/12
Who All Really Knows?
« on: October 16, 2012, 03:22:30 PM »
When I received my HIV+ result last week there of course was a little bit of a paper trail already at that point.  The clinic I was at had contacted me to get tested which meant from just my cell phone number that was given to them they were able to get my name and date of birth.

In the paperwork I have had to fill out they have required my drivers license number and social security number, along with my current address.

So my question is, where do my results go?  Obviously the case worker that I met with knows, but are they required to report all of my information to some database?

I guess my concern grows out of what's public information?  Is it possible for someone to go online and cross reference some information to pin point me as being HIV+?
10/11/2012 Journey Started
10/17/2012 First Labs: VL=57,645  CD4+=730  37%
10/31/2012 Started Complera
11/30/2012 Labs: VL=80  CD4+=929 40%
12/24/2012 Started Stribild

Undetectable since 1/15/13 CD4+= Over 1,000

Offline Pilot

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Re: Who All Really Knows?
« Reply #1 on: October 17, 2012, 01:30:19 AM »
From what I have read, yes your in a data base or bases but the info is  put in under a number assigned to you and not your social security number. One state wanted to use the ss number as your identifier but met resistance when they could not prove they could not be hacked and the info used to injure someone.  Your personal info is not available to just anyone.  If your not sure, then just ask your case worker where the info goes and who has access.  I am sure they will be glad to tell you.

Offline leatherman

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Re: Who All Really Knows?
« Reply #2 on: October 17, 2012, 10:37:00 AM »
In the paperwork I have had to fill out they have required my drivers license number and social security number, along with my current address.
This sounds, since you talked with a case manager, like you've been signed up to be a patient at the clinic. If that's the case, just like any doctor's office, they need that information for billing and client-data tracking purposes. Did you also sign any confidentiality/disclosure forms? I agree with Pilot. You should contact this case manager and find out exactly why you gave this information and for what purposes. Of course, since you already gave up this information, it's already out there; but at least you'll know where it's gone.  ;)

On the other hand, many states have contact-tracing programs and HIV reporting programs (often name-based). The anonymous contact-tracing is where you supply names of past partners so the health dpt can contact them and suggest that they get tested. This program works great in helping infected people get tested early. This kind of program is done for all STIs. The name-based reporting reports an HIV positive person into the state database. This allows the state to show and verify how many people they have who are HIV+, which helps determine how much state and federal funding a state can get and/or use to treat those patients. Other diseases have been tracked this way for funding purposes.

So don't be surprised if your local health department contacts you soon about your HIV diagnosis. They may want the names of sexual partners, and to talk to you to make sure you understand the importance of an HIV diagnosis and of treatment.

While both programs have often caused consternation for the patients/clients involved, HIPAA laws apply so privacy is legally protected. These programs have been in place and used for over 30 yrs with HIV and even longer with STIs.
leatherman (aka mIkIE)

chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Online Miss Philicia

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Re: Who All Really Knows?
« Reply #3 on: October 17, 2012, 11:11:43 AM »
CDC HIV Infection Reporting provides details, and all 50 states currently employ the same confidential name-based reporting standards for surveillance data. As it says, four years ago this wasn't the case in terms of data collection consistency. That said, they also use very stringent privacy safeguards, so you shouldn't worry about any of this in my view. You can also use the search function in that link and look for "privacy" and find other links if you need more assurance.

If you are going to worry about anything, I think it would be more along the lines of stipulating how a doctor and his/her office contacts you personally. All intake forms I've encountered in the past have a place to state how they contact you and what information they might leave on a phone to address any patient's privacy concerns.

Joe Blow on the internet, whether it be a friend, family or someone at work, will never be able to access any of this information.
« Last Edit: October 17, 2012, 11:14:26 AM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline WindySkies

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  • Tested + 10/11/12
Re: Who All Really Knows?
« Reply #4 on: October 17, 2012, 04:58:41 PM »
I pretty much figured it was for CDC purposes.  Let's face it, it's not like I would be running for public office and worrying about it coming out.  My main concern was it being listed by simple google searches which sounded pretty far fetched to me to begin with.

10/11/2012 Journey Started
10/17/2012 First Labs: VL=57,645  CD4+=730  37%
10/31/2012 Started Complera
11/30/2012 Labs: VL=80  CD4+=929 40%
12/24/2012 Started Stribild

Undetectable since 1/15/13 CD4+= Over 1,000

Offline Dr.Strangelove

  • Member
  • Posts: 202
Re: Who All Really Knows?
« Reply #5 on: October 18, 2012, 12:48:12 AM »
Years ago, I worked in a hospital for a while. It was quite an eye-opening experience in terms of confidentiality.
Although I was only some sort of intern, I was given unrestricted access to the lab records of all patients ever treated in that hospital. This was in a small town where everyone knows everyone. I witnessed, on several occasions, how the nurses did HIV tests of patients they suspected or knew to be gay without their consent. This is illegal in my country but no one seemed to care. And the medical personnel didn't seem to be too bothered by confidentiality concerns either. They did gossip a lot so that some patient's information left the hospital.

I was quite horrified.


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