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Author Topic: National Registry of HIV/AIDS Patients  (Read 11498 times)

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Offline Inchlingblue

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National Registry of HIV/AIDS Patients
« on: October 01, 2009, 06:32:28 PM »
I was reading an article about the funding process for Ryan White programs and it discussed how cities receiving money from the Federal government must start using a name-based system, rather than a code-based system, since the CDC wants to start a national registry for HIV/AIDS patients.

As I read it I was not sure what to think. I remember when the late William F. Buckley, Jr. recommended tattooing those with HIV. Yet things have changed since then, it isn't quite the stigma it used to be. Still, something about a "National Registry" doesn't sit well with me.

I wanted to start this thread in order to get others' take on this, maybe get more perspective. I guess two questions I would have is: Are there "National Registries" of other diseases? What would be the point/purpose of such a registry?

from the article:

The legislation, called the Ryan White HIV/AIDS Treatment Extension Act of 2009, currently contains a three-year period for states, including California, to switch from a code-based record system of people infected with HIV/AIDS to a name-based record system, a process with a number of steps that can take some time, according to Ernest Hopkins, director of federal affairs at the San Francisco AIDS Foundation.

The Centers for Disease Control and Prevention hopes to build a national registry of HIV/AIDS patients once the name-based system is finished.



LINK:

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2009/09/30/MNE519VD1H.DTL
« Last Edit: October 01, 2009, 06:40:57 PM by Inchlingblue »

Offline skeebo1969

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Re: National Registry of HIV/AIDS Patients
« Reply #1 on: October 01, 2009, 06:42:18 PM »



  Not sure if the it sits well with me either.  Since AIDS/HIV is viewed more of a pandemic than an affliction, I guess it sits within reason to have a "National Registry"  from the paranoid, higher ups.
I despise the song Love is in the Air, you should too.

Offline Puckslinger

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Re: National Registry of HIV/AIDS Patients
« Reply #2 on: October 01, 2009, 06:44:57 PM »
What is the logic of those who want to change to a name-based system?

Is it so people can check to see if a potential date is listed in the registry?

I think a name-based registry could lead to all sorts of subtle and not-so-subtle discrimination in areas like jobs, housing, ect.. (As if there isn't enough of that already.)

I'll be interested to see what others think too.

Offline RapidRod

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Re: National Registry of HIV/AIDS Patients
« Reply #3 on: October 01, 2009, 07:06:49 PM »
I was reading an article about the funding process for Ryan White programs and it discussed how cities receiving money from the Federal government must start using a name-based system, rather than a code-based system, since the CDC wants to start a national registry for HIV/AIDS patients.

As I read it I was not sure what to think. I remember when the late William F. Buckley, Jr. recommended tattooing those with HIV. Yet things have changed since then, it isn't quite the stigma it used to be. Still, something about a "National Registry" doesn't sit well with me.

I wanted to start this thread in order to get others' take on this, maybe get more perspective. I guess two questions I would have is: Are there "National Registries" of other diseases? What would be the point/purpose of such a registry?

from the article:

The legislation, called the Ryan White HIV/AIDS Treatment Extension Act of 2009, currently contains a three-year period for states, including California, to switch from a code-based record system of people infected with HIV/AIDS to a name-based record system, a process with a number of steps that can take some time, according to Ernest Hopkins, director of federal affairs at the San Francisco AIDS Foundation.

The Centers for Disease Control and Prevention hopes to build a national registry of HIV/AIDS patients once the name-based system is finished.



LINK:

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2009/09/30/MNE519VD1H.DTL
That is old news. http://www.statehealthfacts.org/comparetable.jsp?cat=11&ind=559

Offline skeebo1969

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Re: National Registry of HIV/AIDS Patients
« Reply #4 on: October 01, 2009, 07:09:24 PM »
That is old news. http://www.statehealthfacts.org/comparetable.jsp?cat=11&ind=559

LOL...  Just shoot it with a twelve gauge next time Rodney! ;)
I despise the song Love is in the Air, you should too.

Offline Assurbanipal

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Re: National Registry of HIV/AIDS Patients
« Reply #5 on: October 01, 2009, 07:30:36 PM »
Don't see a problem -- some states (including mine) were using name based systems before they were required to anyway.  If you are concerned about it, the CDC guidelines and links to confidentiality requirements are here http://www.cdc.gov/hiv/topics/surveillance/reporting.htm
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline RapidRod

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Re: National Registry of HIV/AIDS Patients
« Reply #6 on: October 01, 2009, 07:44:35 PM »
LOL...  Just shoot it with a twelve gauge next time Rodney! ;)
ROFL

Offline BlueMoon

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Re: National Registry of HIV/AIDS Patients
« Reply #7 on: October 01, 2009, 09:13:59 PM »
Yes, that caught my eye too and it sounds ominous to me.  I don't like the idea of a national registry of anything, but it seems to be how things are done now; a drivers registry, no-fly list, criminal DNA database, etc.

There's always a price to pay when the feds get involved in anything.
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline Angel-Ronnie

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Re: National Registry of HIV/AIDS Patients
« Reply #8 on: October 02, 2009, 12:53:52 AM »
if they are thinking of a National registry for people living with hiv/aids, why don't they do one for Lung Cancer, Diabetes, Asthma, Asbestosis, TB, Yellow Fever etc.? Seems governments have nothing better to do with their time but to think of crap to waste taxpayers money. In stead they should concentrate on unemployment, Crime, Murder, Rape
Bide the Wiccan law ye must,
In perfect love and perfect trust
Eight words the Wiccan Rede fulfill
An' ye harm none, do what ye will.

What ye send forth comes back to thee,
so ever mind the Law of three,
follow this with mind and heart,
Merry ye meet, and merry ye part.

Offline weasel

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Re: National Registry of HIV/AIDS Patients
« Reply #9 on: October 02, 2009, 01:13:04 AM »


 I found out last spring that  I AM  REGESTERED with the Las Vegas Health Department !

  NOT  the one in Missouri !

  Missouri  can NEVER  claim ME   for their records !!!!!!!!!!!!!!!!!!!!!!!!!

  Sounded pretty  Bizarre  to me ,But that is how it seems to work !

What ever state  YOU  lived in WHEN you signed up  is the state that claims you as a statistic !

                        This info came straight from the official    I.D  in charge of Missouri

              Health Department ! We are allowed to sit in once every three months .

                                                                             Carl


   P.S.   OH YES they use my FULL   name  :o
" Live and let Live "

Offline RapidRod

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Re: National Registry of HIV/AIDS Patients
« Reply #10 on: October 02, 2009, 04:11:03 AM »
if they are thinking of a National registry for people living with hiv/aids, why don't they do one for Lung Cancer, Diabetes, Asthma, Asbestosis, TB, Yellow Fever etc.? Seems governments have nothing better to do with their time but to think of crap to waste taxpayers money. In stead they should concentrate on unemployment, Crime, Murder, Rape

Thinking? It's been in place for a while.

As of April 2008, all 50 states, the District of Columbia, and 5 dependent areas—American Samoa, Guam, the Northern Mariana Islands, Puerto Rico, and the U.S. Virgin Islands—use the same confidential name-based reporting system to collect HIV and AIDS data.

Offline minismom

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Re: National Registry of HIV/AIDS Patients
« Reply #11 on: October 02, 2009, 07:28:04 AM »
Is this only for those who sign up for Ryan White or ALL pozzies?  I know that papers / medical opinions / whatever have been written about Mim with NO mention of her name or any specifics about where we live.  I had to sign a stack of papers for those to be "shared".  We did it because there's so little published about peds-pozzies.  However, I'm not fond of the idea of her name floating around out there.  If they're so concerned with confidentiality, then why use names?

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Assurbanipal

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Re: National Registry of HIV/AIDS Patients
« Reply #12 on: October 02, 2009, 08:40:56 AM »
All HIV poz nowadays  (all  with AIDS in the past).

The information is collected at diagnosis under procedures set up by the State.  CDC says these should include the following:

"All state and local programs should collect a standard set of surveillance data for all cases that meet the reporting criteria for HIV infection and AIDS. The standard data set includes the a) patient identifier, b) earliest date of diagnosis of HIV infection, c) earliest date of diagnosis of an AIDS-defining condition, d) demographic information (e.g., date of birth, race/ethnicity, and sex) and residence (i.e., city and state) at diagnosis of HIV infection and of AIDS, e) HIV risk exposure, f) facility of diagnosis, and g) date of death and state of residence at death. In addition to this information, the date of HIV diagnostic testing, the results of these tests, and exposure to antiretroviral treatment for reducing perinatal HIV transmission should be collected for all infants with perinatal exposures to HIV. Surveillance information, without patient identifiers, should be encrypted and forwarded to CDC through the HIV/AIDS Reporting System (or equivalent) in accordance with current practice. To address specific public health information needs, local surveillance programs can cross-match HIV and AIDS surveillance data with other public health data (e.g., tuberculosis data) and collect supplemental surveillance data on all or a representative sample of cases. CDC will provide technical assistance and recommend standardized surveillance methods to assist in collecting supplemental surveillance information. "

http://www.cdc.gov/mmwr/preview/mmwrhtml/rr4813a1.htm

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline leatherman

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Re: National Registry of HIV/AIDS Patients
« Reply #13 on: October 02, 2009, 10:03:44 AM »
Lung Cancer, Diabetes, Asthma, Asbestosis
Most of those diseases you listed do not have registries because those not communicable diseases. ;) There's not as much reason to track a disease that people can't casually spread to one another (which could result in an epidemic)

(I'm not commenting on the rightness or wrongness of the procedure by the way, just pointing out that registries, like internment camps, are one of the means that many gov'ts have at their disposal to "stop/contain" the spread of a disease)

unemployment, Crime, Murder, Rape
and they do track unemployment, along with those crimes you listed, by names addresses etc.

The Unemployment bureau and SS will always have records of exactly how much and when you received unemployment (that's how they know where to mail the unemployment checks LOL)- and that data is available. I saw mine when I applied for disability.

As to those crimes, which are totally different from being unemployed LOL ;D, that info is kept in court records, arrest records, prison records, sex offender registrations etc. Much of that info is freely available under the freedom of information act. However much of that info is not publicly disseminated because once a criminal has served his sentence and goes back to public life, that info could be used to illegally discriminate against them in housing and employment
leatherman (aka mIkIE)


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

Offline Joe K

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Re: National Registry of HIV/AIDS Patients
« Reply #14 on: October 02, 2009, 11:04:35 AM »
While I do not like the idea of a national registry for pozzies, it is much needed, for allocating resources for Ryan White and ADAP.  It would have been nice if they started some form of reporting 25 years ago, so we would have a better idea of the magnitude of HIV infection.  We are really guessing about many areas of the HIV community and obviously many people are guessing incorrectly, when pozzies are dying because of insufficient ADAP funds.  If we had better data, maybe we could more accurately target funds where they are most needed.

I would also like to see this registry become "dynamic" in terms of tracking the movement of pozzies by geographic area.  When I lived in Florida, Miami got less in HIV funding, than Detroit (where I moved from), even though Miami's number of infected was much higher.  Since I tested poz in Detroit, Michigan will always get my "share" of the HIV money pie and I'd like to see a way to update our "movements" so funding can be used most effectively. 

Offline Inchlingblue

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Re: National Registry of HIV/AIDS Patients
« Reply #15 on: October 02, 2009, 01:19:22 PM »
While I do not like the idea of a national registry for pozzies, it is much needed, for allocating resources for Ryan White and ADAP. 

As far as allocating, they were able to get numbers with a code-based system that didn't include names.

Offline Miss Philicia

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Re: National Registry of HIV/AIDS Patients
« Reply #16 on: October 02, 2009, 01:44:06 PM »
I ran across this last week but haven't had time to read it through, but I'll slap it up here and get around to it later as I'm out the door in a few minutes to have my head shrinking session:

MYTHS AND FACTS ABOUT HIV CASE REPORTING BY NAME
VERSUS BY UNIQUE IDENTIFIER


http://www.actupny.org/reports/myths-names.html
"I’ve slept with enough men to know that I’m not gay"

Offline mecch

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Re: National Registry of HIV/AIDS Patients
« Reply #17 on: October 02, 2009, 03:35:15 PM »
I remember when the late William F. Buckley, Jr. recommended tattooing those with HIV.

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2009/09/30/MNE519VD1H.DTL

I remember that clearly. It was deplorable. However, I was also very young and very very horny.

In the 90's i realised the number of HIV+ people who had lied to me, point blank, direct to my face, before and after sex, and even in long term relationships.  Buckley suggestion remained and remains gross in an imperfect world but also, ironically, with some advantages in an imperfect world.

Well, that is tangential.

A registry might have therapeutic, research, funding, treatment, and prevention uses.  

Switzerland registers all known HIV+ people and does research on us.  Its all highly confidential and has nothing whatever to do with employment or health insurance.  Doctors themselves cannot access the list.  Only researchers on the project. And I think HIV docs.

Oh, also, they use that list in the rare case that a criminal transmission charge goes to court.  They know the strain of HIV that each person has at the moment it is first identified.  They have even traced infections to certain individuals.  I asked my doc what they did in those cases and he said, nothing, they can't, and anyway it was assumed to be the unsafe choice of the formerly HIV- person. 

The latter example - could the USA really keep to that confidentiality and neutrality?  Its in the swiss blood - really really HUGE respect for privacy. 

Bush listened in whereever he wanted.
« Last Edit: October 02, 2009, 03:38:58 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Assurbanipal

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Re: National Registry of HIV/AIDS Patients
« Reply #18 on: October 02, 2009, 03:51:40 PM »
I ran across this last week but haven't had time to read it through, but I'll slap it up here and get around to it later as I'm out the door in a few minutes to have my head shrinking session:

MYTHS AND FACTS ABOUT HIV CASE REPORTING BY NAME
VERSUS BY UNIQUE IDENTIFIER


http://www.actupny.org/reports/myths-names.html

copyright 1997
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

 


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