LAT: California's HIV Tracking System May Be Scrapped

[DeepModem Mom]

HIV Tracking System May Be Scrapped
California uses codes instead of names to protect patient privacy, but even some former supporters say coding is too cumbersome.

By Charles Ornstein, Times Staff Writer


It was heralded as a way for California to closely track the spread of HIV without compromising patient privacy or civil rights. Rather than reporting infected patients by name, public health agencies would identify them by codes.

Despite its lofty intentions, however, California's 3-year-old reporting system for the human immunodeficiency virus has become a bureaucratic morass.

Laboratories are reporting incomplete or erroneous codes to health departments. Doctors' offices aren't keeping required logs of their HIV-positive patients. Public health officials say their backlog of cases numbers in the thousands as they spend hours chasing bad information.

Countless cases are believed to be lost in the system. As a result, health authorities throughout the state say they cannot effectively monitor the epidemic or direct scarce dollars where they are most needed....

***

The U.S. Centers for Disease Control and Prevention does not consider codes accurate enough, and federal officials are poised to withhold funding from states that rely on them....


http://www.latimes.com/news/local/la-me-hiv25jul25,0,4674808.story?coll=la-home-local

[Fly by night]

1. Speaking as a public health epidemiologist, CA's system was a bad idea.

Public health professionals are accustomed to dealing with sensitive information in a confidential manner. And California, like all other states, has "full-blown" AIDS cases reported by name, with that information kept in strictest confidence. Why should information on HIV-infected persons have been treated any different?

This code number system was never a good idea. I hope they scrap it in favor of handling information on persons with HIV infections the same way they deal with information on PWAs.

[DeepModem Mom]

2. Thanks for a professional opinion, Fly. nt

[davidinalameda]

3. yeah but

I've seen too many stories about lists being leaked or even released on purpose

being diagnosed with HIV still carries a stigma, and I'm afraid that fewer people will be diagnosed because of these changes

and knowing human nature, if there is a chance that the information could be leaked, it will

[Fly by night]

4. Having two different reporting systems for the same disease makes no sense

If information has been leaked in California, then fire the SOBs who leaked it and prosecute them for violating the laws that govern confidentiality of public health information. (There are several.)

The code number system -- as the OP indicated -- didn't work, was confusing to all involved and did not assist in allowing Califorbnia officials to obtain an accurate estimate of the incidence/prevalence of HIV disease in that state that would help in disease prevention and funding for treatment. The key is having a public health system staffed by ethical professionals who are trusted by both the affected populations and the medical profession. Of course, California's state government is plagued by a number of problems (including inadequate funding and an over-politicized leadership), some of which are of your own making.

But your public health system can operate in your state in a professional manner, with the right leadership. If we can run a confidential HIV reporting system in Tennessee for the past 15 years that is trusted by everyone involved here, you can do it in California. Can't you?

[davidinalameda]

5. you have a confidential reporting system in Florida as well

that has seen numerous problems

people releasing the names either on accident or on purpose, emails being sent out with the information, etc

as someone who is HIV positive, I don't want my information being released by anyone other than me

there is still a stigma, even in California, and I've talked to people who will not be tested if they think that the information could somehow become public

and down the road, I'm really scared what some people may want to use this information for

there was talk back in the early days of the AIDS epidemic of rounding up everyone and putting them in quarantine

I don't trust the right wingers and especially with this kind of information--lord only knows what someone could do with it

[Fly by night]

6. Once again, prosecute anyone who leaks confidential information.

There are numerous laws (both state and federal) which make this behavior a crime. Go after the leakers and lock them up. (I sympathize about your situation in Florida, however. Back when I was responsible for AIDS surveillance/seroprevalence in Tennessee and then later while working at CDC, I was decidedly unimpressed by the "professionals" running the AIDS program in Florida.)

And once again: persons who meet the case definition of AIDS are reported confidentially by name in every state. Why have two different reporting systems for different stages of the same disease? IMO, you are more likely to have confidentiality breaches when health professionals and public health epidemiologists are unclear who the anonymous case numbers apply to.

[davidinalameda]

7. you can't put the genie back in the bottle

if the information gets out, who cares if you strap the person who leaked into the freaking gas chamber

that information is still out there for people to use and abuse

[Fly by night]

8. For people who are not completely self-centered, it would ...

... perhaps prevent the same behavior from occurring again to someone else. Once again (once again), leaking confidential public health information is a crime. If YOU treat it as such, you will help prevent its re-occurrence.

If this has happened to you personally or to someone you know, contact an attorney or the ACLU. Or contact the most militant PWA organization in your neighborhood. Do something -- don't hinder important public health work by just bitching about it.

The failure to report accurate and timely information on communicable disease in a confidential fashion hampers the fight against HIV and all other communicable diseases for a number of reasons. That is why -- in Tennessee in the late 1980s -- we were exceptionally proud of the fact that 95%+ of all new AIDS cases were reported to our public health staff confidentially within 30 DAYS of their diagnosis. And that occurred in the face of a homophobic state law at the time (since repealed) that specifically exempted HIV-infected persons from any anti-discrimination protection. The health professionals, the patients and the PWA organizations knew we could be trusted because we proved that every day. Even when that meant taking on med school professors at a prestigious university whose "research" put a number of PWAs at risk.

If you won't act when a crime is committed against you or your community, why are you complaining to me (us)?

[ladeuxiemevoiture]

9. That's EXACTLY right.

Back when that sensational superbug story broke out, there were (again) those on the right calling for quarantine and, sadly if predictably, some degree of silence from gays' "friends" on the left.

What such people are discounting is this:

1) quarantine is only effective when you have a cooperative public; some uknown percentage of gays, their loved ones and others at higher risk for infection will not cooperate with measures associated with such a move; and

2) untested people at higher risk will decline to get tested and gamble that waiting until they begin to show AIDS symptomatology will not be compromising their long-term survival prospects.

I also distrust right-wingers on this issue. Been around long enough to know better.

[Fly by night]

10. No one but nut-jobs and hysterics would consider quarantining HIV+

Quarantines are used for highly contagious diseases (which HIV is not) that are either universally fatal (which HIV is not) and/or of short duration (which HIV is not). Anyone advocating quarantining HIV+ is committing to paying all of the living and medical expenses of a multi-decade confinement for these folks, and preventing them from continuing to work and be productive members of society.

It is silly and stupid, and I've not heard it advocated in the "reality-based" world since the beginning of the epidemic. Quarantines of the HIV+ have not been used anywhere on the planet, not even by the most repressive governments. There's much to worry about in this country today, but this worry is wasted energy.

[ladeuxiemevoiture]

11. Ever heard of Cuba?

They had a sort of AIDS quarantine program going - don't know if it still exists as it once did.

When Buckley goes on about tattooing and quarantining, I remember my visit to Auschwitz, and what happened there was they told Jews dispersed throughout Nazi-dominated Europe to get on the trains because "you are going to a better place." They told them that in order to get them to cooperate in their Final Solution. That Can't Happen Here, of course, as Sinclair Lewis told us, but given the direction things have been going, I don't trust any right-wing individual on this issue or frankly, on most issues re: health care. Who knows where it will lead?

[ladeuxiemevoiture]

12. Sorry, didn't mean that to sound condescending.

:hi:

[Fly by night]

13. Don't mistrust most public health workers -- they are on our/your side.

If there are bad ones in your area, file charges against them.

I am unaware of the current existence of a quarantine program in Cuba, and I've worked on controlling the epidemic since 1986. Can you provide me a link to any documentation of the existence of that program, in Cuba or elsewhere?

And don't worry about my taking offense at your tone. I can dish it out AND take it, as my posts above indicate.

[ladeuxiemevoiture]

14. There was a piece on 60 Minutes in the early 90's.

I'll see if I can find a link.

[Fly by night]

15. Thanks. A few countries responded incorrectly 15 years ago to AIDS.

I would like to know what they are doing now. Look forward to the link.

[ladeuxiemevoiture]

16. Since the segment was from over ten years ago, I'm having trouble

finding a precise link, though I am finding various sites discussing Castro's practice of quarantining those with HIV-AIDS.

For example, there appears to be a short film out there (available through ILL?):

"Aspects of criminalization? Cuba's HIV-AIDS quarantine

50 min.) : sd., col. ; 1/2 in.

American researchers, Cuban officials and AIDS patients discuss Cuba's HIV-AIDS quarantine policy."

http://www.library.pitt.edu/subject_guides/latinamerican/latcar.pdf

And there are other sites discussing Cuba's policy of quarantining HIV-AIDS patients. Such as this one:

http://www.cybercuba.com/os.htm

It appears the quarantine policy may have been officially ended in 1993.