ACT UP

Names Reporting... Activists' Responses

GMHC, as of January 20th, has modified its position and, unless their representative on the NYS HIV Surveillance Work Group votes inappropriately (or continues to be as mealey-mouthed and tepid in his representation of the issues as he was yesterday) it is no longer appropriate to zap GMHC or Ron Johnson. In effect, they WERE zapped, got the message, retreated, and while I think the lingering message to legislators and the CDC is a wink and a "don't worry boys, we won't fight hard on this one," their public retraction and Ron's unambiguous statement to the press yesterday need to be accepted.

(That can't be said for Ron Johnson as the Mayor's AIDS 'Policy' Man --just before being hired by GMHC-- complicit in hushing-up that New York City Ryan White funded study that strongly endorsed needle-exchange. . . hushed-up for purely political reasons -- i.e. mayoral re-election and 'war' on drugs.)

The following are selected activist responses to NAMES REPORTING from AIDSACT:

 

GMHC Changes Gears on HIV Reporting, "We The People" 1/18/98

In a reversal of its previous position, the New York-based Gay Men's Health Crisis, the nation's largest AIDS service and advocacy organization, is calling for a system to track HIV infections in New York State, according to a GMHC press release .

GMHC's change in positions takes place as the U.S. Centers for Disease Control, which maintains data on AIDS epidemiology, is pressuring states to begin requiring that all people living with HIV have their status reported to government agencies. To date, most states only require such a report when a person is formally diagnosed with AIDS.

In Pennsylvania, state officials have been debating whether to require HIV reporting. While there appears to be a general consensus both in government and in the advocacy community that such reporting would be beneficial to better understanding the epidemic -- as well as qualifying for more funding from the federal government -- there is serious contention over whether such reporting should include names and other specific information on the individuals reported, or whether some kind of code can be used that would protect the anonymity of those living with HIV.

Philadelphia's AIDS Activities Coordinating Office has said it will hold public forums on the issues involved in HIV reporting before requiring such reports in the city, although state law would probably prevail if the city attempted to come up with a different policy than Harrisburg.

"Shifts in HIV infections and new early treatment options demand new approaches," Ronald S. Johnson, GMHC spokesperson said in the organization's press release. The agency believes that the old system of reporting only AIDS cases, which was initiated in 1983, is now obsolete. "Counting only those who are hospitalized reveals yesterday's epidemic, not today's," he continued. "We are committed to fighting for a new system of tracking HIV infection with strong privacy protections that will help those most at risk: the poor, women, youth, especially gay youth, and young adults."

Although the agency did not specifically rule out name reporting, it did suggest the use of "unique identifier" [UI] system, and stressed the importance of developing an HIV monitoring system "...with strong and enforceable privacy protections to prevent discrimination against people who are HIV positive."

The agency maintains its opposition to mandatory government-run partner notification. "Our call for a new monitoring system should not become a vehicle for enacting punitive, ineffective or unrelated HIV policies," Johnson continued. GMHC also continues its support for free, publicly funded anonymous HIV testing.

Some features of the HIV monitoring system included in the GMHC position paper issued yesterday include: involvement of communities, strong privacy safeguards, evaluation of a "unique identifier" system and re-evaluation of the type of data collected by public health officials.

To date, 28 states have HIV infection reporting systems, according to an article in the January 13th edition of The New York Times. However, these states have only 24% of reported AIDS cases. New York currently has the most cases of HIV infection--69 cases per 100,000. Therefore, an HIV reporting system in New York would greatly increase the number of HIV infections in government registries.

Some believe that HIV case reporting in New York is inevitable, the Times article continued. "It will move to a system of HIV reporting and ultimately it will go to name reporting," predicts Lawrence O. Gostin of the Georgetown University-Johns Hopkins University Program on Law and Public Health. "New York is the most important state in the country in terms of the AIDS epidemic. It's a matter of time."

"We The People" <wtp@CritPath.Org> fastfax #160 1/18/98

 


>The news reports note that GMHC did mention UIs [Unique Identifiers] as their recommended CASE reporting method.

In their press release, GMHC did not mention UIs, not did it state any oppositition to, or opinion about, or issues raised by, or the test-deterrence effect of HIV name reporting. Since what is on the table and being pushed forward by the CDC and many state Health Departments IS names reporting, to release such a statement at this time without condemning name reporting amounts to support. Quotes from Ron Johnson in the New York Times suggested a lack of enthusiasm for or faith in UI systems.

Moreover, GMHC did not trouble itself to link its implicit call for name reporting with guaranteed health care, expanded funding, or any other goals of the AIDS community.

Is money involved? Of course. With politicians and health authorities pushing for name reporting in order to punish and surveille PWHIV, GMHC can expect to be rewarded with juicy government prevention and care contracts in return for collaborating. The pattern is well established in NYC (and presumably GMHC's Ron Johnson, until recently Mayor Giuliani's AIDS Policy Coordinator, knows what the Administration's position on this is) and elsewhere.

Why do health departments endorse name reporting when it would so clearly deter those most at risk from seeking testing? Mainly, they want to identify people who are receiving duplicate benefits paid by the givernment--say, receiving social services at several agencies. A unique identifier system might reveal that this is happening, but it wouldn't identify who is doing it. And if one were really cynical, one might wonder about the Medicaid and other health care (and testing!) costs that are saved if people avoid testing until they are hospitalized with an OI, a scenario which can significantly shorten length of life (and illness) and save the state a lot of money on treatments during the asymptomatic years. -- Jeanne Bergman

Housing Works' position is found at www.housingworks.org


>Hey, my local public health is using the recent CDC conference and
>reports critiquing Texas (big deal) and Maryland (uh-oh) UI systems to
>rule out consideration of a UI system in our state. Can anybody rebutt
>the CDC's recent MMWR report (other than noting that they've yet to fund
>any UI system, or recommend it, or try to educate providers regarding
>one)?

In Hawai'i, we organized a community forum to register unanimous opposition to name reporting. The local Head of Survellance then agreed, before his pilgrimage to Atlanta, that he would have a community Advisory Group to advise him when he got back. To our surprise, 2 of the 3 epi types he included in the CAG opposed name reporting, favoring the public health arguments that name reporting would drive people away from testing and treatment. We also benefited from having an ACLU lawyer (who was largely responsible in the mid 80's for most of Hawai'i's progressive laws guarding HIV confidentiality), and several PWA's.

The group quickly came to agreement on a UI system, the biggest argument being whether it should be created in the lab or in the physicians' office. We are hearing that CDC isn't happy, but are not saying "no" about eventually kicking in some money once we road test it. They don't want to say yes for fear that it will look like surrender, but except for Texas, it looks like there is no move toward names reporting in the states with most of the cases...NY, CA, etc.

There are lots of good documents full of anti-name-reporting arguments at The Mining Co web site and at UCSF's web site <www.hivinsite.org> (?). Of most use are the ACLU position paper, the SFAF policy, and the numerous documents prepared by the invaluable Anna Forbes.

Don't let them steamroller this thru...dig in your heels and FIGHT! -- Tom Sheeran


Unfortunately, the CDC's MMRW, which in the editorial section does not EXPLICITLY call for named reporting, but nevertheless concludes that both the Maryland and Texas examples prove UIs too difficult a proposal.

First of all, if Maryland is such a bust, why then does Liza Solomon, their AIDS director, defend the Maryland system? Maryland has shown NO INCLINATION that there is either the need or the want to move from their UI system to names.

Secondly, we are still void the data from both the MESH and APS studies (MESH is the eight-state study on surveillance, HIV test-seeking behavior, etc -- APS is the AIDS patient survey). the MESH and APS data released at the American Public Health Association Conference (Indianapolis, November 1997), there were a few data sets from the MESH and APS studies that are compelling:

First of all, the trend suggests that if a state lacks anonymous testing, gay men enter will not test. period. secondly, regardless of names or no names, the health department is the LEAST likely referral source of importance to people with HIV disease.

The CDC was supposed to publish the MESH and APS data (in research done by CSF), but did not.

Also, in the MMRW, there is no sound explanation from cdc as to why 75% completeness is not as good as 90% completeness in reporting. the mmwr fails to address the threshhold effect well. in fact, it does not at all, and that is a flaw.

I remain puzzled as to why the CDC felt so damn compelled to put this mmwr out NOW, especially given the fact that the supreme court will rule (by July4th) on whether asymptomatic HIV disease is or is not a disability -- and therefore whether the Americans with Disabilities Act protects hiv asymptomatic individuals or not...

Given that we still lack federal, comprehensive health and medical information privacy and confidentiality laws AND given that the CDC's own waivers and assurances processes for HIV data (the 301d and 308d waivers) are poorly written and problemmatic at best, this rush to name reporting can hurt a LOT of folks way too severely if caution and a sound balance between civil rights and public health concerns are not achieved.__ -- M.D. SHRIVER


Well, I know quite a few people who've worked like dogs for years to make the lives of people with AIDS better, and whose opinions and intelligence I deeply respect, who have reviewed this issue and concluded a) that HIV case reporting is required for any sort of substantive improvement in allocation of resources for services and prevention, b) that unique identifiers aren't a viable solution due to unreliability, and that c) not only do the data not support the notion that named case reporting scares people away from services, the data actually REBUT that notion. I haven't myself looked at the available evidence for or against any of these ideas with sufficient depth to offer an opinion, but once again, I personally find the immediate leap to impute bad motivations to be unwarranted and unproductive. -- Spencer Cox


Spencer Cox wrote:

>not only do the data not support
>the notion that named case reporting scares people away from services, the
>data actually REBUT that notion. I haven't myself looked at the available
>evidence for or against any of these ideas with sufficient depth to offer an
>opinion, but once again, I personally find the immediate leap to impute bad
>motivations to be unwarranted and unproductive.

The American Civil Liberties Union's excellent policy paper on HIV surveillance includes a number of references of studies which show that name reporting certainly does deter people from testing--especially people in the most affected communities. (The paper is available through the ACLU's web site.) And at Monday's meeting of the New York State AIDS Advisory Council's HIV Surveillance Work Group, data presented by researchers from a joint CDC-UCSF project that was clearly designed to provide support for names reporting (by obscuring through questionable anaytic choices the implications of their findings) which indicated that 85% of high-risk subjects stated that it was "likely" that they'd test in the next year if anonymous/no reporting systems were in place; only 61% said they were likely to do so if name reporting were implemented in their state. That's a 24% difference, low by comparison to most scenario-based studies and also by comparison to the actual experience of many states. Even so, that's a full quarter of the gay men in bars, self-described heterosexuals in STD clinics, and IVD users surveyed. With that sort of deterrent effect, no one can argue that the stats the name reporting system would generate are accurate.

And names aren't anymore reliable than UIs: people often change them when they marry or divorce or convert to Islam or lesbian-separatism; they use nicknames, they give false names (duh!) and the same people who might screw up generating a UI will screw up accurately recording a name, because they can't spelkl, don't know which is the first or last name, or because it sounds differt from how it looks. The last happens with my name a lot, and even more frequently, I'll bet, to Spencer Cox.____-- Jeanne Bergman


Gotta Disagree with you almost entirely Spencer. The most recent evidence is pretty damn conclusive that gay men won't test if they think their names will be reported. More: the MESH 8 state study notes that 20% of those surveyed would not have tested if they thought their name would be reported. 1 in 5 is a pretty high number. And distrust for government overall, PARTICULARLY its access to information, is near record highs.

And that begs all questions of the common law right of privacy: if names aren't necessary for the public's health (and UIs are not only not tht bad but might be a whale of a lot better if the CDC would help a little, and providers), WHY should people be forced to give them making themselves subject to all manner of wacko legisatlive scheemes (the latter being fact, not paranoia)?

Frankly, the CDC and most of public health just doesn't care. They're> philosophical and academic biases lead them to want the numbers. If the CDC really gave a damn about bringing people into care and testing, they'd mandate anonymous testing in all states, through which there is conclusive evidence that many more would test. Yet they have not.

In my state, this names reporting issue is eating up tremendous amounts of energy: public health and advocates. Energy that could be much better spent on prevention issues. THOSE issues WOULD critically affect this epidemic: merely counting names won't. Its as if our strategy is shifting from education and caring to counting and controlling - bad,> because it won't work. Worse, because its stigmatizing and discriminatory.

Lastly, one DOES get a might suspicious when the critical issues of how to prevent HIV's spread, or ensure access to quality care are slighted in favor of surviellance!!! As if the tough issues are being overlooked in favor of the easy one's. It has far more to do with Ryan White reauthorization and the terror that CBOs and public health feel at the numbers of AIDS cases going DOWN - along with their funding rationale. _
-- K. Scott


Why now that the AIDS epidemic is predominately people of color did GMHC change Policy?
The argument that people now have access to new treatments doesn't take into account 3 important factors:

1) many people DON't have access to the new drugs. We still need universal health care ,
2) It's still not clear whether these new drugs will be anymore successful in the long term than were previous drugs ,
3) aren't civil liberties protection also important for people of color and/or low-income.)

Just because GMHC was astute enough to place a HIV+ person of color in the position to announce the change in their policy doesn't make it any better. We must remember that simply because someone is of our background, doesn't necessarily make a horrid policy any better, nor does it change the institution's overall makeup (see the article on GMHC "Race Matters" by Donald Suggs in an issue of POZ magazine in 1997).

It's important for people of color, working class people and queer progressives to speak out against mandatory names reporting and the GMHC turncoating.

HIV Disclosure Fact Sheet

1. Early on in the epidemic, William F. Buckley advocated tattooing of PWA's.

2. In every state doctors are required to report the names of people with AIDS to public health authorities. Recently, a Florida State employee sold names on a supposedly confidential list of people with HIV.

3. In addition, Twenty-six states already require that doctors report the names of people who test HIV positive. The method for maintaining confidentiality varies by state. The Nushawn Williams case has brought calls for criminalization of sex by HIV infected persons.

4. In twenty states it is already a crime for an HIV positive person to knowingly expose another person to HIV. It is unclear disclosure of one's HIV status is a mitigating factor. It is also unclear what sexual practices may constitute exposure.

5. In this year's 1998 legislative session, bills on both HIV names reporting and HIV-reckless endangerment will be introduced.

6. This fall, the New England Journal of Medicine and the CDC came out in favor of confidential HIV reporting. In fairness, NEJM conceded that, all things considered, maybe the best route was an anonymous reporting system.

7. The two basic arguments for reporting the names of people with HIV are the delivery of better health care and better tracking of the epidemic. It is unclear how maintaining a state list will improve health care. Universal health care would improve HIV health care.

8. This week GMHC announced its support of HIV reporting in New York State, with no promises of increased access to treatment or input from the HIV community. While they favored coded confidential reporting, they did not come out against actual names reporting. This enormous concession by the nation's largest AIDS service organization could essentially change the terms of the debate on this and other HIV issues.

9. In New York State, health authorities send letters to people who have communicable diseases. For many people this is a frightening experience that will only drive people away from being tested. A new bureaucracy devoted to tracking and reporting of HIV infected individuals will detract from scarce resources available to combat the epidemic. Unless this bureaucracy is armed with additional resources for treatment, the concept that names reporting will lead to better health care will remain a myth.

10. It is likely that a person seroconveting today will remain healthy for decades. Is it possible to ensure confidentiality for that long of a period? For what valid purposes are HIV positive people being placed at risk of accusation, arrest, tort lawsuits, and blackmail by the state and a lifetime of sex partners?__

-- posted by Steve Gabriel _from__http://www.sexpanic.org


Confession: i am fatigued by this issue. it comes up every year in various forms. in fact i tend to try to disuade our group from working on it as a major focus when i can because it is is reactive, repetitive (just because we have been there so many times before), and because victory means not loseing ground (rather than gaining something new). these reasons are no good, i understand- i'm just offering them as a picture of the mental fatigue that names reporting so often produces in AIDS activists. "Shit. gotta stop the bean counters again- time out from improving Medicaid managed care, getting drug access, and fighting for syringe exchange, and reforming the state ADAP program"--- know what i mean?

i can't believe this thread is consuming the list again --- BUT- i never got a real response from an earlier theorem i posed here. although i am not in any way a bean counter, i continue to wonder if the whole debate is sort of based on some dumb dumb thinking on the part of those who think they will get a larger bit of the pie if we have actual names.

A) (common sense and a wild guess would indicate that) many EMA's use statistical smoke and mirrors to inflate the number of HIV+ people in their areas. if we have to actually count real people, the numbers are likely to go down.

B) whether the numbers we use now are real or not, presumably the overall proportions won't change dramatically by recording and counting names. changing allocation percentages based on numbers will require changing the percentages, not shifting all the numbers up or down a bit, more or less equivalently. (follow that?)

C) name reporting or HIV reporting advocates claim that more people will get into care and treatment if the government has their names. but the people who are not in care and treatment are two types: those who chose no treatment, who are not really the object of this debate, and those who do not know they are HIV positive because they have not been tested, out of fear, ignorance or lack of opportunity.

this last group will still not be tested simply because the government begins to collect numbers that are arguably more or less 'solid'. if > i'm understanding things here, no new people will discover they are seropositive. and, in fact, the seemingly tiresome public health arguments that names reporting will keep some people away are still true, since some of the untested people who do not know that they have the virus - are presumably not getting tested out of fear as it is. increasing the big brother factor by collecting names (and the inevitable stupid things that governments will do with those names) will discourage those folks even more.

Please respond, listers; i am just making this stuff up. i am in no way an expert on this issue. but i seem to just fundamentally fail to understand what the people who are even nominally on our side hope to gain from names reporting. "better data" is avoiding the question. _-- Paul Davis


I do know what you mean. But what, exactly, do you suggest we do, Paul? Give it up and let the "bean counters" collect names since that's what they want to do?

I agree with you that it's not going to help anything and that they shouldn't be going after it. But they are, Blanche. They are. And this debate won't end until it's resolved one way of the other.

Some activists (more than a few, I think) feel so strongly that this issue is a waste of time that they say we should bag it, let states collect names, and move on to other (bigger) issues. So what if it means that some people won't get tested because they're afraid of name reporting. So what if people are put at risk in all kinds of ways because their privacy will be violated. Let's just move on. Is that your view?

I'm sorry about the mental fatigue. That's, unfortunately, the way of it with fighting for civil liberties. It's kind of like washing the dishes. You just have to keep doing it over and over.__ -- Anna Forbes


<< I can't believe this thread is consuming the list again--- BUT... >>

I guess my question back, is why shouldn't it consume this list? because it is not about therapeutics?

The very future of a great many people's lives lay in the balance as this debate is advanced forward. by July 4, the Supreme Court could rule and do irreperable damage to the HIV+ communities, and all of this would have a direct and damaging impact on many individuals both poz and negative. The debate over UIs and names is neither academic nor gratuitous. It is about the value of certain individuals and communities who present into our (damaged) health care system (if at all, if ever at all) bringing with them legacies of mistrust and abuse forced onto them by the very <institutions> that are now telling us that we need your name and you can trust us.

Shalala's allowance for law enforcement access into medical records is not an anomoly. Look at what the Clinton administration is NOT doing on needle exchange and mix that into their perspective that youth should serve time in adult prisons. Utterly Dickensian, and exactly what is at the heart of this debate. Gay men, in a trend analysis of the CDC-UCSF data (the MESH study that was SUPPOSED to be released in the UI MMWR) mshowed that gay men would be deterred from testing if name-based reporting was in place and no anonymous testing option was there. Remember that 10 states have eliminated anonymous testing after switching to name reporting.

Prop. 187 ring a bell? Latinos, both documented and not, fled our school and health systems, even in San Francisco where a health commission edict stated that our contractors would NEVER enforce the proposition, even if the state deemed it a constitutional law. Regardless, we had numerous Latinos flee the system.

Is it so difficult to imagine that the perception of injury for Latinos under prop 187 in California is THAT different for IDUs or gay men? The truth of the matter is that a deliberative process was had by GMHC. I disagree with their conclusion, obviously.

But, to have the press glom onto both their release and the MMWR without fully reading what has been said (and what has NOT been said) as well as what has been proven (and what has NOT been proven) is sad. And all too normal.

In their MWR, I still contend that the CDC did not prove that Maryland data, at 75% completeness, was not as good as 90% completeness on a system with names. The threshhold efficacy value of the data at 75%, for planning purposes and resource allocation under community planning is NOT soleley contingent upon epi profiles. It must factor in STD epi, substance abuse waiting list stuff, uni9ntended pregnancy data and anecdotal and other dtata sets. It seems to me that 75% completeness is better than 50%, which is better than 3%. call me simple. just a few thoughts...__

-- M.D. SHRIVER


>Frankly, the CDC and most of public health just doesn't care. They're
>philosophical and academic biases lead them to want the numbers. If the
>CDC really gave a damn about bringing people into care and testing,
>they'd mandate anonymous testing in all states, through which there is
>conclusive evidence that many more would test. Yet they have not.

Let's not forget that there is indeed another VERY real problem. Just as with the upcoming 2000 census, the reason politicians and public policy people get their pants on fire about numbers has as much to do with how much money they get from the feds. This is not just about privace and individual protection. This is about funding streams.

>In my state, this names reporting issue is eating up tremendous amounts
>of energy: public health and advocates. Energy that could be much
>better spent on prevention issues. THOSE issues WOULD critically affect
>this epidemic: merely counting names won't. Its as if our strategy is
>shifting from education and caring to counting and controlling - bad,
>because it won't work. Worse, because its stigmatizing and
>discriminatory.

>Lastly, one DOES get a might suspicious when the critical issues of how
>to prevent HIV's spread, or ensure access to quality care are slighted
>in favor of surviellance!!! As if the tough issues are being overlooked
>in favor of the easy one's. It has far more to do with Ryan White
>reauthorization and the terror that CBOs and public health feel at the
>numbers of AIDS cases going DOWN - along with their funding rationale.

Right...and since nothing has really changed substantively in terms of rigorous and intensive protection of the rights of people with HIV, especially poor people without access to a viable legal system, there is no rationale that would cause me to trust the rationale of GMHC's policy analysts. They have not made their case in any event, so I see no reason to trust them at this time. I don't care WHO they are. I care a LOT more about what they say and the evidence they have. And frankly, aside from having not made their case to the community at large, they must realize that in order to do so, they should have waged a far broader campaign. Now, it simply looks like the very arrogance and "father knows best" attitude that has consistently irritated and infuriated so many other activists. Trust must be earned. And what GMHC's policy people may have garnered in the past is rapidly evaporating, at least until they utterly repudiate the notion of names reporting and rely strictly on unique identifier systems. Learn from the mistakes of other UI systems to produce a better system may also be a prudent measure. __ -- George M. Carter


With all due respect. Mike, I fail to see any _real_ discinction between the CDC mandating something and them making it a condition of funding. You're right, technically the CDC has no power to mandate. But compliance with their guidances is invariably a condition of funding and, since it is, states jump on the "guidance" bandwagon so rapidly it can make your head spin.

The CDC persists in insisting that it has no power to force name reporting. I see that as highly disingenuous. We all know (all too well) how our states respond when failure to comply with a condition of funding will cause loss of funding. The fall into step with _whatever_ the condition is in a heartbeat.

A few years ago, the CDC made it a condition of funding that grantees have standards and procedures for partner notification. Mirabile dictu -- all the states that didn't already have such procedures got them in a big hurry! And this was _before_ passage of the new CARE Act language requiring states to "make a good faith effort" to notify "spouses" of known HIV positive people.

Remember even further back, in 1988, when the CDC issued guidelines banning use of their funding for AIDS prevention education materials that were "objectionable to the American public" and directing every grantee to convene a Program Review Panel to review publicly funded materials to assure that they did not offend community sensibilities? CDC didn't mandate it -- couldn't mandate it -- but made the creation of such Panels a condition of funding. And, surprise, surprise, all our localities suddenly had Panels -- no matter how stupid, pointless and time-wasting we thought they were. So let's not fool ourselves. The CDC guidelines on HIV surveillance will have the force of a mandate simply because they will be tied to CDC funding.

What's especially interesting to note about all this is that the CDC consistently refuses to make state-maintained access to free, anonymous HIV testing a condition of CDC funding! When asked about it, they respond that they can't contravene state law and that if states want to eliminate public access to anonymous HIV testing access (as ten states have), they have every right to do so. Funny how the iron hand in the velvet glove (the purse strings) can be used to effectively mandate all kinds of things, but not this!

We need to pay _great_ attention to what the "parameters" of the CDC's "best practice guidance" are. Because you can bet your boots that they will have the force of a mandate, no matter how they spin it.

On a suspicious Saturday morning.... _ -- Anna Forbes


From the Gay Men's Health Crisis' Press Release:
> "...a new monitoring system is critical to help prevent
> new infections, especially among young people..."

Really? Why? Abstinence will protect young people the best. Practically, of course, that doesn't happen. But what happened to safer sex teaching? Risk reduction? Needle access?

Funny, Rudy Mussolini was bitching about 51% of births being (gasp) out of wedlock and not knowing what city policy could do about this except go after "deadbeat" dads (and if they really CAN'T afford child care, insisting citizens accost them in the street, call them a bum then throw them in jail.)

Yet the word "condom" never passed his lips.

How the fuck will a names reporting program prevent new infections? It will merely prevent new testing by youth scared shitless of the state. (And homeless, substance users, etc., etc., etc.)

Are you now or have you ever been a member of the HIV club? Whom have you screwed?
Nuts. __ -- George M. Carter

 


NY State HIV Names Reporting Update 02/13/98

The New York State AIDS Advisory Council's HIV Surveillance Work Group held two tedious all-day meetings early this week. On Monday, the group was moving towards some clarification of its goals, terms and assumptions. Under the prodding of Dennis deLeon of the Latino Commission on AIDS, some members were beginning to acknowledge, if not fully accept, that there may be epidemiological options and issues worth considering beyond the false and unnecessarily limited choice between name reporting and Unique Identifiers modelled on Maryland's system.

Unfortunately, on Tuesday a series of speakers, the majority of them recent converts to name reporting, dragged the group's discourse to its lowest level yet. Dr. Helene Gayle and Dr. Kevin DeCourt from the CDC dismissed any case reporting system other than name reporting, even though Gayle admitted that the CDC financially supported names lists but did not help pay for research and development of UI systems. Despite an excellent presentation about alternative UIs by Anna Forbes (which should have been given five meetings ago) and cogent, strong, and well-reasoned testimony opposing names-based reporting from NAPWA's Mike Shriver, AIDS Action's Christine Lubinsky and NMAC's Maguelina Maldonado, several subsequent presentations stifled further discussion. These statements called for mandatory partner notification, which was specifically not on the agenda; the participants' inability to keep the issues separate manifests the impossibility of building a "firewall" between names collected for case reporting and the use of those names for other purposes. The mandatory partner notification advocates called on people with HIV to take "responsibility," but their language evoked older, hate-driven themes of blame and shame, victims and predators, deceitful bisexual men of color and dangerous drug users, pariah stereotypes that the AIDS community used to resist, not replicate.

The most puzzling position was that of GMHC's verbose Derek Link. GMHC is on the record opposing name reporting, despite its public waffle several weeks ago. Yet Derek Link has trashed Unique Identifier systems and extolled name reporting at great length at every opportunity on the Work Group, and described calls for mandatory partner notification as "a breath of fresh air." After giving a long exposition described as summarizing GMHC's position but omitting any mention of name reporting, Link was asked by Work Group Co-Chair Jeff Reynolds what GMHC's position on name reporting is. Link replied: "We will vote for Unique Identifiers." Asked again about name reporting specifically, he said: "We will oppose name reporting on this panel."

Two interpretations of this extremely weak position are possible. GMHC could be lying to the "community," saying one thing in public forums while in fact pushing very hard for name reporting in the venues where it matters--where CDC, State and City public health officials are present. Alternatively, maybe the agency's policy position is being very seriously misrepresented by an employee who disagrees with the official stance and is using his role as an agency representative to advance his personal opinion against a formal policy position decided by GMHC's Board of Directors and senior management. Either way, GMHC has a major credibility problem, and, if the organization is against having the State collect names, a political problem as well.

­­ Housing Works: New York AIDS Issues Update 02/13/98


As noted, I make no representation of GMHC's lobbying activities. Since my lover stopped working there, I do not in fact know what their activities are. However, I know a number of people who have worked on this issue who regard the political and personal vitriol associated with a public position in support of named HIV reporting to be unworth it, but who have privately communicated to policy-makers their personal support for it.

There is not a community consensus on this issue. Any effort to bully one out undermines the integrity of the overall effort to advocate on behalf of people with HIV/AIDS. Perhaps if opponents of named reporting spent more time encouraging their opponents to clearly articulate and argue their position, without attempting to punish anyone who goes against "the consensus," then we could have a reasonable discussion across the community about this issue. However, at present such discussion is not possible, and as a consequence, some advocates have felt the need to communicate their views privately. I'm not arguing that it's right, I'm arguing that it's the logical consequence of this "Are you now or have you ever been a supporter of named HIV case reporting" atmosphere. ___-- Spencer Cox


I don't quite understand. You're saying that if GMHC is pushing one thing in private by the complete opposite in public tht THAT is the fault of name reporting oppoenents? I suppose becuae their virulent and maybe intemperate opposition makes GMHC duck, in private?

Isn't such a discrepancy essentially just lying?

I do not assume such a dicrepancy by GMHC, just wondering and somewhat marveling at your reply Spencer. __­­ kscott


Spencer Cox wrote:
> Housing Works Wrote:
> >GMHC could be lying to the "community," saying one thing in public >forums
> while in fact pushing very hard for name reporting in the venues >where it
> matters--where CDC, State and City public health officials are >present.

> I can't speak to GMHC's lobbying activities, but this kind of discrepancy
> between public position and private lobbying activities is undoubtedly one of
> the greatest successes of the odious and explicitly Stalinist efforts of many
> name-reporting opponents to shut down any community-wide discussion of this issue.

Stalinism? Hmm. I don't know what's going on in NYC, but here in Seattle the Governor's Advisory Council on HIV/AIDS and Gay City (a community group) sponsored public forums all over the state. Participants overwhelmingly opposed names reporting, with a very, very few "I'm still not sure" and "Yay, names reporting" responses. But health officials are ignoring this. I guess you'd call them the "Central Committee", so that's not Stalinist, just "Democracy from the center." ­­ Richard Jackman, Seattle, WA


Hmmmm. Let me just say that I haven't even considered Maoism an option since the '70s, and that I, and indeed every HIV+ person I know here in KY consider names reporting an incredible threat to our civil liberties and, as importantly, an immense threat to stopping the spread of the epidemic. Sorry if we cannot get past that.

The fact that you and "every HIV+ person you know in KY considers names an incredible threat to your civil liberties" does not necessitate rancor. I'd suggest comparing Anna Forbes reasoned and civil critiques to the raving of some of the other posters to this list.

I can only wonder what sort of safe and secure Ivory Towers the proponents of names reporting live in because for the rest of us.

Actually, I'd suggest that it's the oponents of named reporting who live in an ivory tower. As an HIV+ person, my name went on a list -- a list that is FAR less secure than any surveillance database -- the moment I first tested my CD4+ cells, approximately two weeks after testing HIV+ and charged it to my private insurance. All future very expensive claims were recorded in the same way. Had I been reliant on ADAP, that would've put my name on a list. Had I been reliant on Medicaid, that would've put my name on a list. If you're able to keep your name off lists that are far more accessible than any surveillance database, you're living in an ivory tower. If you look at the records, receiving medical care is the real risk to confidentiality -- there've been far more breaches in the health care setting than the single recorded breach in the surveillance database.

it's scary as hell. That is the least that I ask the proponents of names reporting to concede. Maybe I should phrase it this way. How would you like to live in rural Kentucky and have your name on a list ANYWHERE that identifies you as HIV+? Do you receive health care for your HIV infection? Then your name is on a list identifying you as having HIV infection. I come from Southern Georgia, so I'm not entirely unaware of these issues. Get my drift? Those people might want to discuss that before they go speaking to anyone publically or privately.

 


Why is it that among the "good guys" who support names reporting, they all seem to think that somehow the money is going to better get to where it needs to be? I cannot help but believe that no matter what the results of names reporting ends up being, the data will be incredibly flawed as far as reflecting the true nature of the epidemic, and it will be used to try to pit people with AIDS/HIV against each other , fighting over scraps. Efforts to mainstream AIDS into the public health system and do for what remains an uncurable deadly disease what has been done for syphillis, for example, is not progress. The major concession of reporting by unique identifier is more than enough to give the epidemiologist everything they need to paper push, and enough to give the politicians ammunition to bandy away- pillaging as they go through budget items that deliver life sustaining services to people with AIDS.

I cannot help but believe that anyone concerned with ended this epidemicm or providing services to people with AIDS is going to get anything they want from names reporting. We have nothing to gain and our very lives to lose. You want to call that Stalainist? Go right ahead. It doesn't matter what you call it, it's still true. For the cure, ­­Barry


Names reporting has to do with reliability of epidemiologic data that allows for estimation of trends in the epidemic. For instance, presently, 1% of AIDS cases occur in adolescents/young adults (11-23), while in states with HIV case reporting, 17% of cases occur in adolescents/young adults. Allocation of resources, both regionally and in terms of risk behaviors, depends on quality of data.

In addition, allocation of Ryan White funds are presently pegged to the AIDS case reporting database. However, data from New York and other areas indicate a substantial decrease in the number of people diagnosed with AIDS, most likely related to the use of antiviral therapies that delay or possibly even prevent development of AIDS in a substantial number of people. Consequently, if we keep relying on the AIDS case reporting database, the epidemic will falsely appear to be shrinking in cities where the most people are getting therapy, even though more people will be getting HIV and requiring services.

Finally, without reliable HIV case reporting, Congress would likely look at a shrinking number of AIDS cases and wrongly conclude that the epidemic was shrinking.

Names are only required as the link to demographic data. In the absence of a reliable UI system, it's the most cost-efficient and reliable system we've got, and given the magnitude of the changes seen in NY, it's necessary to make the switchover quickly, or we're gonna have a long period in which we have no idea of what's going on with the epidemic. Furthermore, as CDC is likely to be flat-funded next year, where's new money to create a whole new UI system gonna come from? Prevention. And we're not spending enough money on prevention as is. ­­ Spencer Cox


>I personally think Bob R.'s comments about Barry's point about being on a
>list in rural ANYWHERE or for that matterurban anywhere were extremely
>naive and sounded like some beurocratic establishement response for why
>names reporting really shouldn't be a big deal for anyone.

That point was only part of the rhetorical question. To put it more bluntly.

1) We already have all of these lists of people related to HIV treatment and services, and they are names lists, not unique identifiers.

2) We have a big discussion about some additional states creating public health lists of people who have tested postive for HIV.

How do these lists differ? Is one list better or worse than another? If they are essentially the same, then why differentiate the public health list from the others? Shouldn't they all be treated the same? In which case logic would dictate that we should either shut up about the public health list or start bitching about the others. But all I hear about in this debate is the public health list. Why? Is it because people know about that list but not about the others?

Some make the argument that names reporting of HIV will drive people from being tested. The data I've seen on that seems inconclusive.

Logic would dicate that the existance of social services and pharmacy lists would likewise drive people from accessing those services. Is that the case? I haven't seen any data. Has the question even been asked? I'm not arguing one position or another, but I would like to see something more than anecdotal opinion in this debate. ­­ Bob Roehr


Okay Bob,

Let me give it an esoteric tackle. As far as I can tell, the lists that already exist are in no way comprehensive lists of PWA. One can only hope that the pharmacies/physicians provide some level of security and use the knowledge of those names for limited purposes that are more or less agreed upon by the HIV+ person who gives them their name, in order to receive medical treatment. Likewise with the social service agencies. I've had it out with our local ASO over what I believe are inadequet security of client records. They insist the standard health department encryption is enough. I believe if the same computers have internet access, it is not ,because of "cookies".

Names are necessary for those purposes in order for people to receive services. Off the top of my head, the usefulness of any other list where people do not self-identify as HIV+ is sinister and should be resisted wherever possible. Having a names based list everyone who has tested positive on one list at a level as large as a state is wide open for abuse. So, yes, I'd like to see all lists treated basically the same the only priority being the confidentiality and delivery of services to people with AIDS.

Who knows how many people go without treatment or diagnosis because of fears of loss of confidentiality. We know that it is the most vulnerable who will suffer the greatest under a names reporting system because the more empowered know how to work rhe system to protect their privacy and still access what they need. The easy example is the home test kit. On a broader level, I have know many people over the years who access medical treatment outside the system through "friends who are in the health care field". If it is done with illicit drug trade, it certainly is done with HIV treatment, even among positive people themselves. There, I said that out loud. Obviously, that is neither the best delivery of medical treatment, nor can it attain the maximal results.

I view anything that stands in the way of anyone recieving the best medically indicated treatments available or which stands in the way of anyone being able to find out their HIV status and react in their own best interests by accessing treatment as "the enemy". There is a great deal of bigotry out there, and HIV+ folks are rightfully fearful, the more vulnerable the more fearful. Let me reiterate something I preach all the time. HIV robs people of all kinds of things, but the hardest to take for most of us is the constant assault on our integrity and dignity. The invasion of privacy that names based reporting brings to battlefront against AIDS is an unnecessary invasion into what little privacy we have left. And it is wrong. For the cure. ­­ Barry


>I understand the concerns Barry has in rural america, but for those urban
>areas hardest hit, the issue of funding formulas are a new major concern, and
>getting the most accurate data available is of prime importance. Here in
>Miami, every dollar counts, as we are strapped and secverly underfunded
>already. This in no way relieves the beauracracy from their accountability
>for protecting that information. ­­ Joey in Miami

for the one millionth time: those who lead us to believe that new federal dollars--or even significant changes in the allocation of current dollars--will be created by collecting names are just fooling themselves, and maybe only trying to fool you.

A) people who choose not to get tested now will NOT choose to get tested under MNR. no new cases will be indentified.

B) in fact, some believe that the long and honorable tradition of cities fudging their projections of the theoretical number of HIV cases results in a higher number than an actual count would.

C) funding levels will not increase. if a region's count changes dramatically, then the pie will be sliced differently. does anyone really suspect that the relative percentages of people with HIV will change dramatically by region?

Therefore: MNR proponents are either 1) blinkered, or 2) evil pukes seeking to facilitate state invasions of privacy or 3) duped dummies foolishly thinking that their budgets will increase if a few minor civil liberties are jeapordized. I suspect that this last category hold the majority of those silent secret MNR supporters.

I don't feel overly obligated to ensure that any of those views are validated as viable options in an array of equivalent policy choices.

MNR is wrong and wrongheaded. ­­ Paul Davis


Here we go folks. I'm forwarding this as an example of what we're dealing with. The amendment below basically requires someone ACCUSED of almost any crime to basically submit to an HIV test. Can you imagine this law being administered anyway other that indiscriminately and arbitraily? I don't think they are planning on giving tuberculosis tests or finding out if someone has the flu.

> Maria asked me to get your opinion on the following bill. HB584, an act
> relating to crimes and punishments. Basically it amends an earlier bill that
> requires fingerprints, photos and reports when a person is arrested on a
> felony charge. The amended section calls for all city, county and state law
> enforcement agencies to test any suspect for communicable diseases if that
> suspect had his/her bodily fluids, saliva, hair, fingernail scrapings, skin
> scrapings, or any combination thereof in which thae person exposed may have
> transferred to the victim of the crime or the crime scene.

> If the person arrested refuses toosubmit , then he shall be hwld without bail
> until such time as he can be brought before the court to be compelled to
> submit them.

> I can transcrib the bill verbatim for you if that would be more helpful, but
> basically that's what is says. What are your thoughts?

> Also, Maria would like for you to summarize current mandatory testing laws
> where they relate to prisons, emts, hospitals, etc. ­­ Sarah


Ah, a venting in response to SPencer's comment below. I've no knowledge of the level of discourse outside of WA state on this subject, but considering Spencer's message, I can only wonder.

Now, I agree that name calling is unproductive. And yes, I agree that ad hominym arguments are unproductive. And of course we want everyone to feel free to express an opinion. Presumably those expressing an opinion will be kind enough to inform themselves of the topic, its background, and the realities of how certain policy options deeply effect people's lives BEFORE they presume their opinion will be well-regarded, or much listened to for its substance.

And I've always been a proponent of opening up discussions, sharing them widely, continuing to move them forward ad nauseum, etc.

But Spencer, your note that many in favor of name reporting are intimidated by activists into remaining publicly silent is simply not true out here, and to the extent it is, it is like a fart in the whirlwind of public health's intimidation. In fact, those in power - public health the WA State Medical Assoc., the head of our largest county health depts, our state Dept of Health - have been forthright in for a LONG time desiring names reporting. They recently reinforced their preference with NO reference to attempts to misuse such data, dismissal of all concerns about discrimination as irrelevant to the need for epi data, no consultation with wider publics...... and this in the same year they sought to open public health files carte blanche to law enforcement on fishing expeditions.

Further, they make much the same arguments you do: that there is a 'silent majority' of people in favor of names reporting but intimidated from speaking out, OR that those opposed to names reporting are just an activist fringe (as if much was ever accomplished that WASN'T first promoted by a few).

Frankly, in every policy discussion I have ever been in with public health, out here at least, extending over eight years, or with those promoting 'traditional' public health approaches, the concerns of the communities involved have been dismissed or actively derided as merely 'anecdotal', or non-professional, non-scientific, non-medical, etc. - no matter if they come from wide experience, or other disciplines of sociology, law, political science, ethics, etc. They either seek to intimidate, or arrrogantly fail to facilitate valuable community input (THEN wonder why citizens aren't willing to help on planning groups, or speak up). AND they usually make reference to a silent majority, or frantiically cast about for 'other' voices: ie. either quislings or new ignorant folks eager to be pleasant and agreeable.

It takes quite a bit of courage and fortitude for community folks, involved in HIV Prevention Community Planning, our Governor's Advisory Council HIV/AIDS, our Title I Council, etc. to voice a concern or contrary opinion. Usually it takes about six months before they figure out the emperor has no clothes and is pretty ugly to boot. To speed this education up, we have to point out to 'newbies', time after time, that this is NOT rocket science, that in fact this is far more about ethics, and political will or courage then epidemiology, a need for data, or 'science', and that their opinions can be just as valuable as that arrogant doc who thinks his discipline holds all the answers. We have to further point out that public health here is still run under the same systems and mostly by the same people whos policies and practices failed so abysmally in the '80's: that public health has STILL never forthrightly called for a law against discrimination on the basis of sexual orientation (approx. 85%+ of WA state AIDS cases are MSM); that the overwhelming # of deaths up to about '96 were from infections prior to passage of any state HIV prevention laws or funding (ie. however laudatory WA state's present millions for prevention or drugs is compared to Mississippi or somewhere, in fact the horse was out of the barn and in the next county before public health and policymakers bestirred itself); that it took about six years after state funding for HIV prevention before money was targetted to high-risk behaviors (faced with an ebola river virus in Zaire, these folks would send teams to Egypt in the name of prevention); that the public and private health establishment were flat scared shitless during the Bergalis hysteria and ready then- and no less ready now - to sacrifice all HIV+ health care providers on the altar of public hysteria and political pressure (NOT science); that all during the time of these failed approaches, lost opportunities, and political cowardice the same claims of expertise and same deriding of 'community' input was being made.

Your comment is really unbelievable in MY context Spencer.


Kelly wrote:
> But Spencer, your note that many in favor of name reporting are intimidated by
> activists into remaining publicly silent is simply not true out here, and to the
> extent it is, it is like a fart in the whirlwind of public health's
> intimidation.

You know, I recently found myself in Houston having a discussion about this issue (which was very relevant, because their state legislature was holding hearings the next day to discuss dropping their UI system in favor of names). I was amazed to discover that no one felt it necessary to yell! It would be inconceivable in a city like NYC or SF or DC. So you may, in fact, be correct that, in the rest of the country, people are capable of behaving like civilized human beings when they disagree. However, the behavior I've seen here has been so really, really terrible -- for instance, Catherine Hansons of the Lambda Legal Defense and Education Fund threatening to "get" GMHC's Derek Link, and then (surely by coincidence) an attack on Derek appearing in the Housing Works Update. I really can't tell you how many people have said to me, "I support named reporting, but it's just too much trouble to say it publicly." Having myself received death threats during a disagreement with several community-based groups, I'm not unsympathetic to this point of view. -- Spencer Cox


Barry wrote:
> Hmmmm. Let me just say that I haven't even considered Maoism an option
> since the '70s, and that I, and indeed every HIV+ person I know here in
> KY consider names reporting an incredible threat to our civil liberties
> and, as importantly, an immense threat to stopping the spread of the
> epidemic. Sorry if we cannot get past that. I can only wonder what sort
> of safe and secure Ivory Towers the proponents of names reporting live
> in because for the rest of us. it's scary as hell. That is the least
> that I ask the proponents of names reporting to concede. Maybe I should
> phrase it this way. How would you like to live in rural Kentucky and
> have your name on a list ANYWHERE that identifies you as HIV+?
> Get my drift? Those people might want to discuss that before they go
> speaking to anyone publically or privately. -- Barry

Spencer Cox wrote:
> > As noted, I make no representation of GMHC's lobbying activities. Since my
> > lover stopped working there, I do not in fact know what their activities are.
> > However, I know a number of people who have worked on this issue who regard
> > the political and personal vitriol associated with a public position in
> > support of named HIV reporting to be unworth it, but who have privately
> > communicated to policy-makers their personal support for it.

> > There is not a community consensus on this issue. Any effort to bully one out
> > undermines the integrity of the overall effort to advocate on behalf of people
> > with HIV/AIDS. Perhaps if opponents of named reporting spent more time
> > encouraging their opponents to clearly articulate and argue their position,
> > without attempting to punish anyone who goes against "the consensus," then we
> > could have a reasonable discussion across the community about this issue.
> > However, at present such discussion is not possible, and as a consequence,
> > some advocates have felt the need to communicate their views privately. I'm
> > not arguing that it's right, I'm arguing that it's the logical consequence of
> > this "Are you now or have you ever been a supporter of named HIV case
> > reporting" atmosphere. -- Spencer Cox

Yes, access to private medical records and some public records would tell you who has HIV. But havng a list of those with HIV is a lot easier and more simple. Witness the Illinois law.

Besides, a lot of laws allow warrantless sharing of public health info with law enforcement but do not allow warrantless acess to private medical records.

Further, to an extent this area is symbolic. It is not about just gathering data. It is about control of the marginalized, shifting all responsibility to the HIV+ for prevention, and about the very approach to HIV prevention. That is why the debate need not but does quickly move to mandating partner notification and a host of other essentially non-surviellance concerns.

This will very much change the status quo. ­­ kscott


Bob Roehr wrote:
>Are you all as worried about those records? And how
>will names reporting change the status quo?

It is certainly reasonable to worry about those HIV care and benefits records; CDC and state and local health depertments like to point out that most violations of confidentiality are at the clinic/doctor/pharmacist/insurance company level. (This is supposed to be an argument in support of name reporting, but it is tangential, other than suggesting that the more lists there are, the greater the risks, and that there must be stricter, and enforced, protections.)

The real difference between HIV case reporting by name and the status quo--collecting names for establishing eligibility for benefits and accessing and recording care--lies at the level of people getting tested. If they avoid testing, HIV+ people can't be counted, counseled or cared for. Anything that deters people from testing will screw up the numbers of HIV cases counted: the actual scale of the epidemic will appear to be less severe than it is. And because name reporting deters people in some at risk populations (drug users, men of color who have sex with men) more than in others, the data on prevalence--the percentage of people infected in each community--will be screwed up. So both the numbers (and the money that will supposedly follow those numbers) and what I assume are the basic goals--to expand prevention efforts and get infected people into care ASAP--will be screwed up.

AIDS case reporting by name "works" because if you are ill enough for an AIDS diagnosis you are too ill to avoid care, even if there are threats to confidentiality. Obviously, that's not the case for HIV. -- Jeanne


Yes, Bob, I am well aware of exactly how much my privacy is already violated. Just because I'm from KY doesn't mean I'm not as savvy as the next guy. However, it in no way means I need to cooperate with it. Nor does it mean that I need in any way, shape or form need to encourage any more loss of privacy for anyone else.

And, the answer you gave above was no answer. So, I take it you would not like at all to live anywhere in rural America and be on any sort of list that identifies you as HIV+.

Those of us who enjoy neither the wealth or priviledges attached to being spokesmen for GMHC do not need the wealthy or privelidged speaking for us. For the cure. -- Barry


It must be a very different place out there in WA WA, but let me tell you, unfortunately in Florida, we get next to nothing from the state or county level for Care, and absolutely nothing for prevention - so be very thankful. It could be much worse. I agree about most of your comments, as a member of the council, consortium, CPG etc... But we need to feel able to look at all sides of the question without being attacked. Since Name reporting started in FLA (exclude the Tampa incident), people are still getting tested as much as before now. With the new aggreagate level data were starting to see from the State Health Office, we see a completely new trend in the epidemic, and in new areas, differnt groups of people etc... and this data is fresh.... newly diagnosed people. I am their worst nightmare about security of data. But I see the priceless value of this data. I would have preferred Unique IDs, but I have to deal with reality, it is here in FLA and we have to make it work!

<< that it took about six years after state funding for HIV prevention before money was targetted to high-risk behaviors (faced with an ebola river virus in Zaire, these folks would send teams to Egypt in the name of prevention); that the public and private health establishment were flat scared shitless during the Bergalis hysteria and ready then- and no less ready now to sacrifice all HIV+ health care providers on the altar of public hysteria and political pressure (NOT science); that all during the time of these failed approaches, lost opportunities, and political cowardice the same claims of expertise and same deriding of 'community' input was being made. >>

> It must be a very different place out there in WA WA, but let me tell you,
> unfortunately in Florida, we get next to nothing from the state or county
> level for Care, and absolutely nothing for prevention - so be very thankful.
> It could be much worse.

I know it could be worse. But comparing WA situation to a situation where the gov't took even less care of its citizens.... 'Hey, look at Guatemala, children, where they've been slaughtering each other for forty years. Or just think of how bad East Timor is and was. Or just think, gay youthwere committing sucicide twnety times the rate of straights, not ten like it is now..... Be grateful'......

Horseshit. In what other realm do we compare to a standard of poor achievement and bad policy? The standard is one of achievement, and good policy, not bad policy. I think we've gotten too used to crumbs, incompetence, bad actors, and ill will. Like if we get a crust of bread, hey, yesterday we got nothing so we're happy. Bull.

Out here they just LOVE comparing WA to worse situations, positively preening over the comparison..... and using it as an excuse to cease pushing.

> I agree about most of your comments, as a member of the council, consortium,
> CPG etc... But we need to feel able to look at all sides of the question
> without being attacked.

I fully agree with that also. And can understand Spencer's concerns. But usually it is the powers-that-be implicitly - if not explicitily - attacking, not vice-versa.

> Since Name reporting started in FLA (exclude the
> Tampa incident), people are still getting tested as much as before now.
> With the new aggreagate level data were starting to see from the State Health
> Office, we see a completely new trend in the epidemic, and in new areas,
> differnt groups of people etc... and this data is fresh.... newly diagnosed
> people. I am their worst nightmare about security of data. But I see the
> priceless value of this data. I would have preferred Unique IDs, but I have
> to deal with reality, it is here in FLA and we have to make it work!

Could you give me any data you have regarding those new trends, etc., and how you were able to spot them through names reporting? Send it privately I suppose. Also, one criticim of Florida's shift to names reporting heard previously, was that it was not well funded nor achieved through a good transition. Any data on that?

And I understand that you have to get the best out of that which you are faced with, but could not a UI system have gotten you the same HIV data? The main problem with UI systems seem to be their tieins with other registries rather than the HIV info they give.


>One can only
>hope that the pharmacies/physicians provide some level of security and
>use the knowledge of those names for limited purposes that are more or
>less agreed upon by the HIV+ person who gives them their name, in order
>to receive medical treatment.

As a front page story in the Washington Post the last few days has made clear, CVS (the leading drug retailer in the region) and Giant Food/Drug (the regional leader in that sector) have been using an outside firm to send "reminder" notices to clients who let their prescriptions run out. No word on if HIV products were involved. Consumer concern has prompted them to stop.

Scott-Levin's HIV Therapy Audit said in a 1/12/98 news release that "363,640 U.S. patients sought treatment for HIV in the third quarter of 1997." It offered a breakdown of the percentages on mono-dual-triple-quad therapy. When I called and talke with the rep he said had gotten that information from the pharmaceutical companies who themselves receive the names of each person on those therapies. So it would seem that Glaxo's database already has the goods on perhaps a majority of people who know they are HIV positive.

It all points to the need for strong federal legislation on all medical records privacy, an issue that has been languing in Congress for a several years. That is the type of thing I would like energies directed to rather than chasing our tails on names reporting. ­­ Bob Roehr


>I know fully well the importance of
>the data is the accurate number of positive individuals, not the names, how
>arrogant you are to think we don't get it. anyway!!!!!

Several of my posts to this ponderous thread have explained why:

1. I do not belive that epidemiological data collection is of much importance in fighting the epidemic, other than to identify broad trends that are usually painfully apparent to everyone anyway.

2. An "accurate count of psoitive individuals" matters little (except for those whose privacy will inevitably be violated), especially when compared the data plentifully available right now.

3. Funding to any agency or region will be little impacted by numbers alone. Funding levels have much more to do with the exercise of several varieties of political clout than they do with "clean data".

4. Regardless of the above contentions, all data necessary to satisfy any reasonable public health agency with money to disburse (one with the intent to help, not control and crush) already exists in more than ample supply.

Separately, with regards to those who feel that public health guarded data is more or less safe should be aware of health department leaks of serostatus of certain individuals here in Philly, and in Fla, and Texas.

We should also remember the prisoners such as Greg Smith, who are serving what amount to death sentences because their HIV status became known by authorities. Greg is serving an 18 year sentence in NJ for allegedly biting a guard (who was beating him up at the time). Greg was demanding AZT. He has been in jail since 1989.

While Greg's status was not leaked by Health Dept. officials (he was out about his status and was demanding treatment, which was being refused)-his story (and dozens of others like it) does illustrate the nefarious uses to which serostatus information can be put towards.

Also, those who characterize the consistant and loudly voiced demands of all sorts of people with HIV as irrational "fears" are typically those with no constituency (other than the liscence to speak that money or command of disproportionate government contracts unfortunately allows), and no connection to the woman who cannot tell her husband the she is infected for fear of physical violence. These certain advocates have no knowledge whatsoever of the Vietnam vet who was assaulted in his house, and who is continually taunted in his neighborhood simply because he has HIV. These are not hypothetical stories, but tales that just popped into my head during the last week or so that this latest thread has raged on.

The personal tales of shitty treatment faced by those whose HIV status becomes known are told by ACT UP Philadelphia members- relatively sophisticated people in a big liberal Title I city where lots and lots of people have HIV and a huge, sophisticated service delivery system is in place to help.

Certain advocates which--for the purposes of this thread at least--we have agreed have spoken out of both sides of their mouths on this issue are speaking from a sheilded position of priveledge. These certain advocates should consider the harm they are creating for people thay do not know. These advocates should consider taking a real long vacation. __ ­­ Paul Davis


Spencer Cox wrote:
> Most people would consider efforts to prevent people from "recklessly
> exposing" someone to HIV as a legitimate public health purpose. For example,
> some of those who were infected by NuShawn Williams (who, coincidentally was
> never reported to the New York State surveillance database) were below the
> legal age of consent. I would suggest that having unprotected sexual
> intercourse with a thirteen year old when one knows that one is HIV-positive
> constitutes "recklessly exposing" someone to HIV, the prevention of which is a
> legitimate public health goal.

Incredible. You're overlooking an incredible amount or real world history and present realities in favor of a 'sounds good' policy.

I would agree that reducing reckless exposure to HIV is a prime public health goal. However, trying to reach THIS public health goal through the criminal justice system is VERY unwise. Public health, for example, does not use the same standards of evidence nor standards of individual protection as the criminal justice system. That is why sharing information between the public health and criminal justice systems is usually very unwise. They are two different systems.

And the devil is in the details, also. Who said anything about 13 year olds or unprotected intercourse? You really want a jury to decide what 'reckless' is? Or what 'exposure' is? In legislative testimony on the bill criminalizing 'reckless exposure', the prosecutors' lobbyists were asked if intercourse with a condom would be considered 'reckless' or 'exposing': to which they honestly answered 'it would be a question for the jury'. Ha! Do you think a jury would find it NOT recless, unless of course the HIV+ had a signed waiver of consent from the other party (which was another proposed law, and a recent sentence for an HIV+ man)? Would a jury find oral sex 'reckless exposure'? Probably. Yet data demonstrates that 2/3rds of gay men engage in precisely that.

And if there is a public health consequence to 'reckless exposure', why not also prosecute the HIV-, as long as your implementing public health goals through the criminal justice system. IF the reply is that the HIV+ has a greater responsiblity, WHY? Not statistically. Somene positive for years, now on the latest combos, is likely less infectious or 'risky' than someone sexually active who's last HIV test was a year ago (by definition, there is no such thing as someone sexually active who is assuredly HIV-, since 'sexually active' implies they do NOT risk infection, test, wait, then 'risk' again). So if risk-presented=responsiblity you'd have a tough time, I would think, assigning a higher risk to the HIV+. The reason why greater responibility is assigned is pure stigma, and it allows people to feel incontrol without assuming personal responsiblity.

Then too, the law proposed was a 'third strike' you're out crime. Gee, I wonder how much pressure there would be to plea bargain for a black HIV+ defendant accused of 'recklessly exposing' a white girl in a rural jurisdiction in eastern WA, when a guilty verdict meant life in prison without parole (when added to two previous relevant convictions, for example). The law was really just an immense shift of power to prosecutors - it had NOTHING to do with public health goals.....

... except as stigmatization made them harder to reach. You really think folks would want it on record (through a state list of HIV+) of exactly when they tested positive if every sexual contact, or alleged sexual contact, they ever had could accuse them of 'reckless exposure' and haul them in front of a jury? And it most assuredly would happen. 'Course, tatoos on the gentials would solve the 'problem' there, I suppose.

The criminal justice system, and private consensual sexual behavior do not mix well. And if it isn't consensial, then there are alreaady laws under which it can be prosecuted with no need to specifically name the HIV+ - in that I agree with your next paragraph. SO why then the push for such specific laws? Stigma - with again no atttention paid to what messag that sends the public and the HIV+.

> Also, it's important to remember that the absence of an HIV-specific law does
> NOT mean that "recklessly exposing" someone to the risk of HIV transmission is
> not a crime; in New York State, discussions of an HIV-specific law have
> usually been abandoned amidst widespread agreement that existing laws
> prohibiting reckless assault and/or endangerment would apply.

> By contrast, laws passed for explicitly discriminatory purposes (such as the
> Illinois law) clearly are not consistent with public health goals. However,
> with respect to your vetoed Washington State law, the fact that it was vetoed
> (just as the fact that the Illinois law remains unimplemented) is material.
> The fact that these laws have been passed clearly demonstrates that there are
> risks associated with named reporting; the fact that they've not been
> implemented suggests that we have some power to control these risks.

Hmmmmm..... 'power' to control the risks. DAMN flimsy. Both houses of WA state's legislature went Republican last time around. About 30% of the House are members of the Christian Colaition. Our Governor, however, is a Democrat, so he vetoed the law. NO Democratic Governor would have meant no veto. And even a Democratic Governor was out on a limb, since the broader public doesn't really grasp all this.

Note too that the concept i one of your previous messages of 'not impeded service delivery' held tht he should NOT have vetoed the bill. The budget is controlled by the legisalure, and was partially held hostage to NOT vetoing this bill. No budget, no AIDS drugs - and "dead people don't have civil rights'. Again, ceding the essential points re stigma, HIV prevention and significant risk (as the key analytical concept) end up with the 'trains not running on time anway'. Give 'em an inch on the vital stuff, and they'll hang you soon anyway.

> Strange. In my state the response during the Bergalis hysteria was to begin
> drawing up 'lists of invasive prone procedures' - contrary to science - in order
> 'to forestall even worse lists'. Essentially, trading away the critical point of
> significant risk, and merrrily jumping down the slippery slope.

> Policy-makers are sometimes forced into difficult decisions. Our staunchest
> ally in the Senate, Senator Kennedy, has sometimes proposed "no promo homo"
> legislation that, fundamentally, has no teeth, in order to create alternatives
> to the probable passage of Helms-sponsored amendments that prohibited much
> more important activities. It usually means that, in their professional
> opinion, their alternative proposal is the best possible outcome.

Helluva difference between discriminating on the basis of NO significant risk, and laws without teeth. The concept of significant risk is critical to the ADA, and to protecting people with HIV.

Speaking for WA state, the law ALREADY passed in WA state - a supposedly 'collaorative' and progressive state - in conjunction with a list of HIV+, would make the HIV+ sex lives subject to witch hunts. The law MANDATED ( with criminal and civil consequences if not) turning over all reelevant HIV information to law enforcement whenver (I'm paraphrasing and summarizing here) public health thought someone was 'exposing' others to HIV. And we've some pretty wacko public health folks - again, political creatures as much or more concerned about water quality, extending sewers for developers etc. as HIV, and with NO tradition of protecting minority rights. And both law and list are PROPOSED by public health.

Realistically of course, the political power of the gay community, or the fact that the public doesn't care if gay men infect each other, will mitigate how this plays out against gays. But against prostitues and the other 'usual suspects'?! Oh my. __ ­­ Kelly Scott


With regard to "reckless exposure" and other forms of criminalisation, it should be noted that such statutes, where implemented, have been used overwhelmingly against defendants already under the purview of the criminal justice system: prisoners, sex workers, arrestees and detainees, persons on remand and persons suspected of other crimes.

If we support policies which criminalise activity for HIV+ folks that would be legal for people who are negative or untested, it's important to consider who is likely to bring prosecutions under such laws. And what will count as exposure? In Greg Smith's case (as Paul mentioned) as well as Curtis Weeks and a number of other cases brought against positive folks by police or correctional officers, the actual plausibility of transmission (e.g. through biting or spitting) was disallowed or disregarded by the court.

How does the threat of imprisonment help us negotiate safer sex, responsibility, and disclosure-- especially given the massive disincentive to getting tested that "reckless exposure" laws bring about? __ ­­ Rachel in England


Name Based HIV Case Reporting Fails in New Jersey -- Why Institute It Here?
by Anna Forbes

re-printed from "New York AIDS Issues Update -- 2/20/98", published by Housing Works, Inc.

The New York AIDS Advisory Council is now deciding whether and how HIV case reporting should be implemented it in New York State. So far, 31 other states have established some form of name-based HIV case registry. These states, however, are home to only about 25% of all Americans with HIV New York is among the "high incidence" states and territories that have, so far, refused to do HIV reporting. The others are California, Georgia, Illinois, Maryland, New York, Pennsylvania, Puerto Rico and Texas.

In January, 1992, New Jersey became the first high incidence state to adopt name-based HIV reporting. Given its proximity, it is worth checking to see how effectively the policy captures the real number of HIV positive residents in the state.

The AIDS Action Council reports that, when New Jersey instituted name-based HIV reporting, it simultaneously received "a CDC grant of $450,000 for a computer surveillance program. This windfall was from the $5 million that the CDC added to its Surveillance budget in 1991 to "help states adopt name-based HIV reporting.

The CDC now estimates that the ratio of people with HIV in US to people living with AIDS is between 3:1 and 4:1. As of last September, an estimated 13,441 New Jerseans were living with AIDS (35,681 cases reported minus 22,240 known dead). But only 12,955 New Jerseans had been reported with HIV infection (the net number reported after eliminating the out-of-state reports, those that are missing data or under investigation and those that have been moved from the HIV to the AIDS registry)

Instead of having three to four times as many people with HIV as with AIDS (as expected according to the CDC ratio), New Jersey has fewer residents living with HIV (12,955) than with AIDS (13,441). What happened to the 27,000 to 41,000 New Jerseans who should be reported as having HIV if the CDC ratio is correct? Why aren't they appearing in the state's HIV case reporting numbers?

Only 1,237 of the HIV reports filed were "anonymous reports", records of people testing positive at one of the state's six remaining anonymous test sites. So this deficit in HIV reports can't be attributed to people accessing anonymous testing.

Having eliminated that, here are four other possible explanations:

1) New Jersey is doing such a good job of preventing HIV transmission that only a very small number of new infections are occurring. Because only a tiny number of people get infected annually, the number of people living with HIV isn't increasing any faster that the number of people living with AIDS in the state.

2) people with HIV aren't getting tested and, therefore, aren't showing up in the HIV registry.

3) New Jerseans are getting HIV tests but not in New Jersey. Anecdotal reports of New Jerseans traveling to nearby states that do not have name reporting requirements (usually Pennsylvania or New York) for their HIV tests are common.

4) people who can afford it are purchasing and using home test kits for HIV.

The state surveillance report shows that, while 26% of the New Jersey men diagnosed with AIDS in 1996-97 are Caucasian, only 21% of men reported as HIV positive in New Jersey since 1992 are white. African American men, on the other hand, make up 53% of the men diagnosed with AIDS but 56% of men reported with HIV in those two time periods. The percentages by race of women recently diagnosed with AIDS and those reported as HIV positive more nearly match.

We can also see that, while men who have sex with men made up 24% of the New Jersey men diagnosed with AIDS last year, they accounted for only 20% of men reported as HIV positive since 1992. Injection drug users, on the other hand, made up 36% of the men diagnosed with AIDS last year but 42% of all men reported with HIV since 1992.

These gaps in the numbers show that the names of white men and gay/bisexual men are less likely to show up on New Jersey's HIV registry than are the names of men of color. If one sees this a being an economic effect (i.e. that affluent people are better able to evade state HIV reporting requirements than those with fewer resources), it is not surprising that it is more evident among men than women. Women with HIV/AIDS tend, overall, to have low incomes regardless of their race or risk factor.

These reporting differences may illustrate the extent to which possibilities #3 and #4 impact on the number of New Jerseans reported with HIV. But they aren't large enough to answer the real question of why New Jersey's HIV registry contains 30,000 - 40,000 fewer names than expected given the number of New Jerseans living with AIDS. To explain that huge discrepancy, we have to look at possibilities #1 or #2.

If you believe that #1 is the primary explanation, then you will laud New Jersey for its exemplary HIV prevention efforts. But if you believe that #2 is more likely to be the cause, then New Jersey is facing an enormous public health challenge. No correlation has been shown between state adoption of name-based HIV reporting and enhancement of the state's ability to assure medical care to its residents. But studies have consistently shown a correlation between adoption of name-based reporting and public unwillingness to be tested for HIV.

In a recent CDC-funded survey of high risk individuals, 19% -- almost one in five -- identified name reporting as a reason not to get an HIV test. The ACLU's 1997 report on this subject summarizes nine other studies that document a link between name-based reporting and testing avoidance. In one California study, 60% of the individuals surveyed indicated that they would avoid HIV testing altogether if getting tested meant risking name-reporting. The ACLU report also points out that, "the deterrent effect of name reporting is most pronounced in the very populations with the greatest need for preventive intervention: gay and bisexual men, people of color, intravenous drug users, and sex workers."

New Jersey's experience is instructive. Unless there are specific reasons to believe that this failure won't be replicated in New York State, it makes no sense for the AIDS Advisory Council's HIV Surveillance Working Group to recommend name-based reporting as a way of getting an accurate picture of how many New Yorkers are HIV positive. New Jersey's experience shows that it simply doesn't work.


Dear US members of this list,

I am following the debate amongst US members of this list with decreasing interest.

It may be surprising to you but there are fundamental priniciples of individual rights involved in the "ethical" debate about unique identifiers and names reporting. The German constitution laid down under allied controll in 1949 grants the right of informational control to the individual. Only recently, and with repect to the internationally dominant political role of the US, conservatives in our democratic system are attempting to allow state agencies to compare and use their combined information about an individual.

When I stayed at the Center for AIDS Prevention Studies two years ago in San Francisco, I was astonished by the depth of information about individual's preferences and attitudes that were available for scientific research. Reading your debate, I am wondering whether there is any powerr at all left to the individual citizen to control what information about "personal" matters is "confidential" at all in the US.

It may be usefull for you or other prevention programme managers to know about the circumstances of new HIV infections as soon as possible to react to those avenues of dissemination of AIDS as soon as possible. But where in this whole discussion are the boundaries of public interest and privacy? Why shouldn't I myself be the one to decide when I want anybody else to know whether I am HIV- positive or not? Part of me argues that I am privileged to be living in a system with compulsory health insurance and health coverage at an internationally high standard. But part of me is also wondering why anybody should be concerned about my sexual behaviour with another consenting adult including the consequences thereof?

I am considering myself to be equal to other risk-takers in my society and I therefor insist on my individual right to be treated equally. As long as tobacco users, alcohol consumers and other risk-takers are not registered in the interest of "public health" I do not understand the fuzz about HIV? What is so much more dangerous about HIV from a public health perspective?

Considering my background and with respect to the welfare principles established in this country for more than 100 years I am concerned at anybody seriously considering UIs or names reporting as an adequate response to the AIDS crisis. While names and data are registered by the state controlled compulsory insurance system in Germany (covering more than 90% of people with HIV) public access to such data and even the use of such data to the disadvantage of people with HIV has successfully been prohibited (it is considered a breach of the constitutional rights of the individual).

To my mind the focus of the discussion should be shifting to the role of government in assuring access to health care as well as insuring privacy. Where I am living, I am privileged to have the right to get infected and still be "granted" equal rights with other risk-takers. The major fault in the US system does not appear to be the communities response to a health crisis but the lack of a government (and the preceeding ones) to realise that modern diseases cannot be overcome with 19th century capitalistic concepts (and resulting public health principles). Societies produce risks and should be able to respond to the challenges produced without destroying the concepts of privacy and confidentiality. To apply modern principles also means otr accept risks and to cover the consequences communally.

I like the argument that modern warfare is only possible when general health coverage has been pre-arranged. But what kind of coverage does the VA really provide? The US have the highest per capita spending on health care, the highest capital return on pharmaceutical products investment, the largest public expenditure on health related research worldwide - but who is benefitting?

My solidarity is with Jorge, Joe and other people on this list who are striving to get adequate allocation of public spending for health issues. But I am fed up with people from the richest and most powerful nation in the world discussing breaches of fundamental rights regarding informational control while their health care and social status is (to quote George M Carter) at the level of third world reality.

Why the fuck are the rights of the individual as laid down in all the documents from WHO to IAS receiving so little regard in the "leading nation of the world"? Have you realised that your discussion has been of no concern to anybody outside the US, so far? Please do not export it!

Explanations wellcome. __ ­­ Matthias Wienold


"Panel Proposes HIV I.D. Legislation"
Topeka Capital-Journal Online (03/11/98); McLean, Jim

Kansas State Rep. Melvin Neufeld (R-Ingalls), chairman of a state House Appropriations subcommittee that oversees funding on social services, recently proposed legislation for the mandatory reporting of HIV-infected individuals in the state. Neufeld argues that the current system, in which AIDS patients are reported and HIV test results are filed anonymously, does not allow health officials to trace the sexual contacts of people who test positive. Critics claim that the measures may result in a reduction in voluntary testing due to fears about confidentiality. However, Neufeld contends that HIV and AIDS should be treated like any other sexually transmitted disease and not as a "political disease." Dr. Donna Sweet of the University of Kansas agrees that contact tracing is necessary but notes that the stigma attached to the disease often results in housing or employment discrimination. Neufeld also asserts that name reporting would help officials anticipate the demand of state drug assistance program, which is currently in need of about $230,000 in emergency state funding to stay afloat.

Here's another example of someone accusing his opponents of "politics", when his own actions are intensely political. Again, this is why I think we should avoid using the same accusation. Neufield also argues that HIV should be reported the same as other STD's, but I have yet to see any research showing that name reporting and contract tracing are more effective in controlling transmission than anonymous testing and respect for individual privacy. I suspect there is none. The epidemics of other STD's certainly suggest this. (This is an argument I have not really heard names reporting opponents make yet. Comments?) Nuefield also ignores the very real public health effect of discrimination. I think we should focus on public health arguments, rather than civil rights arguments, in opposing names reporting. Then it becomes "Your facts are wrong, your motives are suspicious," rather than "Public health vs. civil rights." More comments?

Richard Jackman, Seattle, WA USTA (Union for Sexually Transmitted Anarchism)


Here are the letters that appeared in the 2/26/98 issue of the New England Journal of Medicine. I am posting all of them because I think it's true that one should read the one Cornelius Baker et al signed (the last one) in the context of the one from Tom Coburn. Also because I am a big Liza Solomon fan and I think the first letter (hers) is well worth reading.

Please note that I haven't attached the footnotes because, for some reason, they downloaded in an illegibile fashion when I got this off the net. If you want to see them, you can access this in the original at www.nejm.com. It's in the 2/26/98 issue.

For the record, I'm also very confused about what it means that Cornelius signed this letter. I think it sends very mixed signals indeed about NAPWA's position on names versus UI's. ___­ Anna Forbes

 

The New England Journal of Medicine -- February 26, 1998 -- Volume 338, Number 9

To the Editor:

Although it is true that Maryland's surveillance system for human immunodeficiency virus (HIV), which has been in effect since 1994, is still being refined and improved, we have found that it has allowed us to perform all the public health functions described in the article by Gostin et al. (Oct. 16 issue). Maryland's system of HIV surveillance by means of unique identifiers has allowed linkage of HIV case reports to death records, has assisted in investigations of unusual strains of HIV, and has been used to inform decisions about allocating funds for service delivery. Our experience suggests that important epidemiologic information can be obtained through a non-name-based surveillance system.

Given the traditional American concern about the privacy of medical records and the very real potential for discrimination against people infected with HIV, we believe that our system provides the benefits of epidemiologic monitoring of the epidemic and averts the creation of barriers to HIV testing and treatment among those concerned about confidentiality. We suggest that states considering HIV surveillance investigate non-name-based HIV-surveillance systems as an important option.

Liza Solomon, Dr.P.H.
Georges Benjamin, M.D.
Maryland Department of Health and Mental Hygiene
Baltimore, MD 21202

 

To the Editor:

The information already available has not been used to prevent HIV transmission among injection- drug users, and widespread HIV case reporting, however meritorious, will not improve that situation.

AIDS-surveillance reports present sufficiently clear and reliable information on the prevalence, incidence, and direction of the epidemic. They indicate a shift in primary risk behavior to injection drug users, in whom approximately 50 percent of new infections are estimated to occur. The disproportionate impact of the twin epidemics of drug use and AIDS on minority groups, particularly minority women, and among neonates is well documented. On the basis of evidence that HIV is transmitted among injection-drug users through shared use of contaminated needles -- which, particularly in the United States, is necessitated by legal restrictions on drug paraphernalia -- European countries have liberalized paraphernalia policies as a specific HIV-prevention strategy for this group. However driven by a war-on-drugs ideology rather than by public health and epidemiologic imperatives, the United States has not taken this simple step and thus has unleashed the epidemic among injection-drug users.

This burgeoning pool of infected injection-drug users is concentrated in poor, urban, and predominantly minority neighborhoods, where the epidemic continues to worsen. Relatively small declines in the numbers of deaths from AIDS among members of minority groups (decreases of 2 percent among non-Hispanic blacks and 10 percent among Hispanics as compared with 21 percent among non-Hispanic whites) are a sad commentary on those left behind despite general "advances." Unless rational policy changes allowing drug users to buy and carry their own injection equipment are enacted, HIV case reporting will have no effect on this population.

M. Daniel Fernando, Ph.D.
550 E. 16th St.
Brooklyn, NY 11226

 

To the Editor:

In June of 1988, the Presidential Commission on the Human Immunodeficiency Virus Epidemic, established by President Ronald Reagan, issued its final report. Its first point state

The term "AIDS" is obsolete. "HIV infection" more correctly defines the problem. The medical, public health, political, and community leadership must focus on the full course of HIV infection rather than concentrating on later stages of the disease. Continual focus on AIDS rather than the entire spectrum of HIV disease has left our nation unable to deal adequately with the epidemic. Federal and state data collection efforts must now be focused on early HIV reports, while still collecting data on symptomatic disease.

Unfortunately, this sound recommendation was not acted on.

It is encouraging that many in the activist community and in academia are now supporting sound HIV policies. However, we should remember it was these same activists and academics who helped establish a very flawed policy in the first place. To continue to go to them for direction seems ill advised in the light of the admissions they now make regarding the sound HIV policy they fought against for so long.

Tom A. Coburn, M.D.
U.S. House of Representatives
Washington, DC 20515-3602

Shepherd Smith
Americans for a Sound AIDS/HIV Policy
Washington, DC 20041

 

The authors reply:

To the Editor:

The three letters in response to our article are representative of a growing consensus that a national system of HIV surveillance is essential for effective monitoring of and public health response to the HIV/AIDS epidemic. Our proposal for national HIV reporting will, of course, not solve all the perplexing public health and human-rights problems presented by the epidemic. HIV reporting is likely to demonstrate an increasingly disproportionate burden of infection among injection-drug users. In previously published research, we have strongly supported greater access to sterile injection equipment, as aptly suggested by Dr. Fernando.

Drs. Solomon and Benjamin raise perhaps the most important intellectual challenge to a national system of named HIV reporting. Given the understandable concern about privacy, names should not be collected by the government unless it is necessary to achieve important public health purposes. Unfortunately, the data from Maryland do not demonstrate that a system of unique identifiers can provide accurate and reliable data. A recent evaluation of the Maryland system supported by the Centers for Disease Control and Prevention found substantial limitations. Of 9971 laboratory reports entered the Maryland system from July 1994 through December 1996, 29 percent of the reports were missing a portion of the unique identifier, including 22 percent that were missing the social security number (the most specific component of the unique identifier). The Maryland system is also limited by a low rate of completeness of reporting (50 percent), an inordinate number of duplicate reports, and lack of HIV-risk information. Finally, a unique-identifier system may create additional risks to privacy by increasing the number of surveillance registries. In order to collect follow-up epidemiologic information, private physicians have to maintain logs that link the unique identifier to a name-based medical record. These multiple registries in the private sector may defeat the privacy purpose behind unique-identifier systems.

Congressman Coburn and Mr. Smith support named HIV reporting but suggest that public health officials, community-based organizations, and scholars have lost any legitimate claim to leadership. This is an unfortunate implication coming from two leaders in American politics. Our positions on HIV policies are not formed by political or ideological beliefs. Rather, they are based on objective assessments of the science and of the public health, which necessarily must take account of the medical benefits to and the human rights of people with HIV infection or AIDS. It is not we who have changed but the epidemic. Given the remarkable progress in medical treatment and a more humane social and legal response to AIDS, new ways of thinking about the epidemic become critically important. We need to create a national HIV-surveillance system that is scientifically sound and supported by the public it serves.

Lawrence O. Gostin, J.D.
Georgetown/Johns Hopkins Program on Law and Public Health
Washington, DC 20001

John W. Ward, M.D.
Centers for Disease Control and Prevention
Atlanta, GA 30333

A. Cornelius Baker
National Association of People with AIDS
Washington, DC 20005


> Thank you for cutting to the chase on a very important fuck-up in
> AIDS activism. Too often, AIDS activists as well as our opponents
> accuse one another of "politics", as if all decisions around life and
> death were not political. So it does us a disservice when one of these
> ladies who doth protest too much denies the political aspects of AIDS.

"Our positions on HIV policies are not formed by political or ideological beliefs.
Rather, they are based on objective assessments of the science and of the public health....."

> It would be better to point out the political intent of Coburn's
> heinious activity, rather than deny our own political intent.

> I'm getting mixed signals regarding NAPWA's position on HIV
> reporting. Could someone post the letter to NEJM? It sounds like a
> muddle similar to GMHC's recent fiasco. Comments? ­­ Richard Jackman

 


 


To be continued...

 


 

see also:

ACT UP/New York's Position on NAMES REPORTING

Myths and Facts about HIV Names Reporting

An Activist's Guide to Unique Identifiers

Congressional Legislation (The Coburn Bill)

NAMES News Media Clips

MEDIA FRENZY