HIV patient names to be tracked...

[J.R.E.]

Apr 1, 3:54 PM EDT

http://hosted.ap.org/dynamic/stories/V/VT_HIV_NAMING_NAMES_VTOL-?SITE=NHCON&SECTION=HOME&TEMPLATE=DEFAULT

HIV patient names to be tracked in all 50 states by year's end

By CARLA K. JOHNSON
Associated Press Writer
 
 
CHICAGO (AP) -- The names of people infected with HIV will be tracked in all 50 states by the end of 2007, marking a victory for federal health officials and a quiet defeat for AIDS advocates who wanted to keep patients' names out of state databases.

Vermont, Maryland and Hawaii, the last states not tracking the names of HIV-positive people, are quickly moving toward adopting names-based surveillance. Eight other states and Washington, D.C., began collecting the names of HIV patients last year, and Massachusetts switched in January.

The states are bowing to federal pressure so they won't lose money for medications and health services for patients.

This is the first year federal funding has been tied to names-based surveillance of HIV. More than $1.4 billion in federal money will be distributed this fiscal year based on new formulas that include numbers of people with HIV counted by states using names. In some states, including Illinois, millions of dollars are at stake.

That's why advocates say they've quit fighting - although they still worry that collecting names will deter some people from getting tested and seeking treatment, and about the possibility of names being released due to security breaches.

"I have patients who are very high-profile individuals - physicians in practice, people who are politicians" who don't want their real names reported, said Dr. Dan Berger, medical director of NorthStar Healthcare in Chicago's Lincoln Park.

In a 2005 security breach in Palm Beach County, Fla., the names of 6,500 HIV and AIDS patients were mistakenly e-mailed to 800 county health workers. Other security breaches have occurred in California and Kentucky.

Some worry that names-based reporting could have the greatest effect on whether minorities and the poor get tested and treated because they may be less likely to trust the government to keep their names secret.

In a low-income Chicago neighborhood 10 miles from Berger's office, patients now are told they must release their names to the state to get medications. Bruce Jackson, director of the Gift House, which offers HIV testing and counseling in southwest Chicago, said some clients are apprehensive, fearing their families or friends will find out they're infected.

Reporting names "can affect if (disadvantaged people) come back for care and it can affect how they describe to other people their experience of getting tested," said Catherine Hanssens of New York's Center for HIV Law and Policy.

There are an estimated 40,000 new HIV infections annually in the United States.

Methods of tracking cases varied from state to state until recently. Some states, including Illinois, and the city of Philadelphia previously tracked HIV with identifying codes that preserved anonymity and were unique to each patient.

Illinois' code-based system was "instituted to protect people's confidentiality because of fears of stigmatization and potential disclosure to insurance companies and family members," said Dr. William Wong, medical director of the AIDS division of the Chicago Department of Public Health.

Illinois started names-based HIV surveillance Jan. 1, 2006, because of federal pressure.

The U.S. Centers for Disease Control and Prevention rejected code-based systems after finding they could lead to double-counting and were cumbersome for health care providers. The CDC announced its support for names-based HIV reporting in 1999, and strengthened that to a recommendation in 2005.

"After many evaluations of code-based systems, it became clear that those systems do not meet CDC standards for HIV data," said Dr. Timothy Mastro, deputy director of the Division for HIV/AIDS Prevention at the CDC. Diseases such as syphilis, tuberculosis and AIDS already were tracked by patient names, he said, making HIV the exception.

Starting this fiscal year, the CDC's HIV numbers were used, along with AIDS case numbers, by the U.S. Department of Health and Human Services to calculate funding to cities and states receiving formula grants through the Ryan White CARE Act, the government's largest HIV/AIDS program. The formulas include only HIV data from states using names-based surveillance.

AIDS advocates, who argued against collecting names of HIV patients in the 1990s, preferred code-based systems to protect the confidentiality of patients and said the CDC ignored evidence that codes could work.

"I've not so much changed my opinion as surrendered," said Ron Johnson, deputy executive director of Aids Action in Washington, D.C. "I still believe code-based reporting is valid and is preferable for HIV reporting. It, for all practical purposes, has become a losing battle."

In Vermont, AIDS advocates succeeded in getting tough security measures written into a bill that would switch the state from a code-based to a names-based surveillance system, said AIDS advocate and Vermont resident Terje Anderson.

The bill prohibits use of networked computers and laptops to store or process any data identifying people with HIV, and allows civil lawsuits for malicious disclosure of that information.

Funding shifts caused by adding the HIV cases to the Ryan White funding formula won't become clear until HRSA makes its awards to cities and states later this year, said Murray Penner of the National Alliance of State and Territorial AIDS Directors.

Housing grants to people with AIDS may be next to use the HIV case numbers to drive funding. The Department of Housing and Urban Development has proposed the change to Congress for fiscal year 2008, said David Vos director of HIV/AIDS housing for HUD.

For now, public health officials are trying to reassure people who test positive for HIV that stiff security measures protect state databases of names.

In Illinois, staff members handling names take an oath of confidentiality and get special training. The names are in a stand-alone computer system, behind locked doors.

"I've never been in that room where they're kept. The security is that tight," said Tom Hughes, a deputy director with the Illinois Department of Public Health.

Participating states strip names and other identifying information from their HIV reports before transmitting them in an encrypted form to the CDC, Hughes and other health officials said.

Berger, the Chicago doctor, said he has told some patients not to give him their real names. He has enrolled patients anonymously in medical studies of HIV drugs without reporting their names, he said.

Health officials said it's impossible to predict how many doctors and patients are finding ways of keeping names out of databases, and whether HIV case numbers will show any decline that can be connected to names-based reporting.

In Illinois, reports to the state of new HIV cases dropped by 14 percent from 2005, the last year of code-based reporting, to 2006, the first year the state used a names-based system. But there was an 8 percent drop in new HIV cases the prior year, long before the change to a names-based system.

With better drugs forestalling the progression of HIV to AIDS, people with no apparent symptoms face knowing their names will be on a state list for decades - protected by security measures, but nevertheless subject to exposure.

"In many ways, it's a different world today than the world that motivated people to insist on anonymous systems for tracking HIV," said Suzanne Goldberg, director of the Sexuality and Gender Law Clinic at Columbia Law School in New York. "A lot has changed, but unfortunately not enough."




Ray

[RapidRod]

Ray, I knew I was on the data base for a couple years now. I'm not concerned. I talk in schools about HIV/AIDS and other groups and I'm not closeted about being diagnosed with AIDS. The comments, "You don't look sick." still gets me.

[milker]

I got a call from San Diego health services the next day I was diagnosed with Syphilis. I told the girl "Woah, so much for anonymity. I signed a form about HIV stating that I was okay to disclose my name to the health dept, not Syphilis". She said that it's automatic, I don't have to sign consent for anything else, it's automatically disclosed to the health dept and the health dept can disclose to higher authorities if authorized by law.

She begged me to give the name of my bf so she could call him. I refused.

Milker.

[red_Dragon888]

This was bound to happen for Aids is the new plague where a cure must be found.  Whether we like it on not, the government must have some check on the immigration.  In addition, imagine Aids or HIV as a bio weapon. Next to global warming, the big fear is airborne Aids, with mass infections, global deaths and disasters.  On the other hand, with the help of research, it may help find the cure for cancer, the common cold and other major diseases.

[RapidRod]

Let me know when HIV becomes an AIRBORNE virus.

[red_Dragon888]

i'll let you know 2 minutes after the world ends

[jkinatl2]

So you don't find this discriminatory, yet compare the term "neggie" to the N word?

Interesting.

This was bound to happen for Aids is the new plague where a cure must be found.  Whether we like it on not, the government must have some check on the immigration.  In addition, imagine Aids or HIV as a bio weapon. Next to global warming, the big fear is airborne Aids, with mass infections, global deaths and disasters.  On the other hand, with the help of research, it may help find the cure for cancer, the common cold and other major diseases.

[Life]

Blood Borne Airogens - sweet....

[aupointillimite]

I am opposed to this for ideological reasons... but practically... I don't care.

I am well aware of the fact that the United States government couldn't find its ass with two hands and a map.

Like how it couldn't find New Orleans that one time after that unpleasantness.

[SASA39]

It is a public secret that In Serbia the Police forces allready have names of all the HIV. Their excuse is " when they have to arrest an  HIV IV drug user with a criminal record they have to take additional measures of precaution" ! ? !   

And what if you have a neg. wife with a kids ? 

And I have heard that the are checking all the private depository  bank boxes every six month. Their excuse is " maybe there it could be some hided heroin " ! ? ! 

Talking about government suppression......................
                                                    Al

[megasept]

imagine Aids or HIV as a bio weapon. Next to global warming, the big fear is airborne Aids, with mass infections, global deaths and disasters. 

 

Dream On! Big fear for you maybe or the uninformed. Your big fear? Whose big fear? Try to learn a little about this disease (your disease?) before you post nonsense that might actually get someone worried about the impossible.

There doesn't have to be a cure for this or any other disease, and you can cure your cold easily with a few thousand mg of Vitamin C. -megasept

[J.R.E.]

A quote from 1998 ( From theBody )


"HIV names reporting is an oxymoron; by discouraging testing, it won't produce the names that such a system depends upon for success," said Steven Fisher, AIDS Action Communications Director. "Without better access to health care, names reporting is the Titanic all over again -- we're creating passenger lists without providing enough lifeboats."



Ray

[hussy_24]

lol airborne aids.....

it might be possible, ya never know >.>

[ACinKC]

Let me know when HIV becomes an AIRBORNE virus.

SON OF A BITCH will we be busy in the AM I INFECTED forums.... holy christ.


Dear Mr. Rapid Rod, I have had an exposure to the NEW HIV virus.  Canyou please advice, I visited a sex worker while on vacation at The Whitehouse and Jenna Bush and I were partying and doing blow off of one of the antique desks in that little round room when she pulled me close to her and asked me to pull her finger.  She then proceeded to fart in my general direction.  Do you think I could have contracted HIV from this.  I am so sure I have it.

[J.R.E.]

lol airborne aids.....

it might be possible, ya never know >.>

For our "Am I infected Guests :

"Can HIV be transmitted through casual contact (shaking hands, hugging, using a toilet, drinking from the same glass, or sneezing and coughing)?
HIV is not transmitted through day-to-day contact in workplaces, schools, or social settings. HIV is not transmitted through shaking hands, hugging, or casual kissing. A person cannot become infected from touching a toilet seat, a drinking fountain, a door knob, dishes, drinking glasses, food, or pets.

HIV is not an airborne or foodborne virus, and it does not live long outside the body. HIV can be found in blood, semen, or vaginal fluid of an HIV-positive person."




Ray

[milker]

I must admit i'm stunned at some of the "Am I Infected" questions.

Milker.

[AlanBama]

I feel the same as Rod on this one, doesn't bother me....I've been on SSD for so long, I'm pretty sure the government knows I have AIDS 

[MitchMiller]

One of the "uses" of this information would be to quickly determine those who have HIV if a flu pandemic hits.  People with HIV would most likely be denied access to therapy if it had to be rationed.  This has already been floated as part of an emergency plan in some states.

[allopathicholistic]

Reducing the margin of error (meaning double counts) = they're cracking down and tightening the belt, or the noose, depending on who you ask 

[Jeff64]

As if there is really a right to privacy....there isn't.

I could not care less about privacy...it is overrated anyway.

[egello]

i oppose this policy,,, it only took less than half a generation for ultra liberal germany to go ultra fascist. u never know which way the public opinion or the government will turn. having actual names of "sick" people that is suppose to be a threat to well being of a society is very scary.

[Ody]

Seems as if its the 80's all over again!!! Some wanted us tagged, tattooed, destroyed, put in camps, and as my dad said, give them all California, it's falling of the planet anyway.

Everyone joined in the fight and we put those ideas down, along with a bunch of other ignorant ideas!!

 Now what has happened? Is this the proof of lack of involvement and mile stones being destroyed? Proof that the numbers in the HIV/AIDS Activist Army are dwindling and less than attractive? History repeating it's self in a new way?!

You can dam well take it to the bank should massive health issues arise we will be the first to be denied treatment, the infection rate is going to sky rocket, testing is going to decrease, and treatment is going to subside causing people to drop like flies in the old days!

So much for the if I get it I just pop a pill and go on with life, no one will ever know mentality!

They know I'm poz, that is if they actually listened on the calls, looked at petitions, read mail, and emails....

So anyone up for cleaning out the cobwebbed trenches that have been abandon? Bring oil to lube the rusting weapons...oh look..tea and crumpets, how nice! HERE WE GO AGAIN!! 

[J.R.E.]

Has anyone read any of the responses on the following page. "Rural Mom" is real special. Talk about, going back to the 80's She suggested we all be quarantined.


http://www.sj-r.com/sections/news/stories/111370.asp


Don't forget to leave a comment. I think they are stuill taking them...


Ray

[red_Dragon888]

So you don't find this discriminatory, yet compare the term "neggie" to the N word?

Interesting.

I am over the N word. 

[Nico]

Well I think it sucks.  Another Bush attack.  He should shave his beaver.  Once this begins, I wonder what will be next?  Remember the internment camps during WWII?  I am sure "Focus on the Family" would love that idea....

Oh and yes, I blame Bush  and Cheney, they can kiss my lilly white homo ass!

Rog

Edit- added one ass to many..

[milker]

Well i'm going to apply for citizenship earlier than what I had planned, just because I don't want to be unable to go back home from vacation because they have my name in their database and start blocking non-citizens with HIV from entering the US.

Milker.

[way.out.west]

It’s human nature for people to take their recent experience and project it indefinitely into the future, as if life will always remain the same as it is today.  But history shows that’s not how life works.

Little by little, we give up our rights and protections, believing that  small sacrifices are needed for the common good.  We all believe there’s no reason to be concerned, because after all, “the government is responsible for our common welfare, and if the the government needs to know that I have HIV, that’s okay”.

The reality is that in the face of  adversity, the population at large quickly becomes fearful – and when people become fearful, they feel a need to seek out and punish those who are “responsible”.  It has happened throughout history, and will happen again.  It won’t matter whether the adversity is an economic recession, or food shortages, or just a hysteria whipped up by demagogue politicians.  Whatever the cause, it’s hard to imagine that people with HIV will be far from the top of the list of those “responsible”.

If this seems implausible to you, I wonder if it’s because everything seems fine today, and it only takes a little extrapolation to see that life will remain this way into the indefinite future.

[terpie82]

I'm deeply saddened, upset, & depressed by this news. Although I knew it was bound to happen sooner or later, I was hoping it'll wait till I become director of CDC and I could lobby my strong opposition and demand for patient rights. But jokes aside, it will take another couple years for us to assess potential repercusions of this decision. I want to say that people will less likely go and get tested, but I can't be sure. The isolated scenario in Illinois is just that...one isolated scenario. Blah, this sucks poo.
-Terpie