One of the heated debates currently raging in the HIV community concerns the need for establishing a system of tracking HIV infection. The existing surveillance system, designed in 1983, counts only those people with a CDC-defined AIDS diagnosis. A series of questions are being posed during the course of this debate. Do we need a better system for the surveillance of HIV infection? Does the current system adequately reflect the scope of the epidemic? Are accurate data being collected regarding the communities most affected by HIV, and therefore most in need of services? If a different system is appropriate, how should it be implemented? Should the system use unique identifiers? Is the reporting of names necessary to accurately track the epidemic and plan for service development and delivery? How does the resolution of these issues affect the development of policies regarding partner notification? These questions, and more, were proposed to Catherine Hanssens, director of the AIDS Project at LAMBDA Legal Defense and Education Fund; Derek Link, director of Federal Affairs at Gay Men's Health Crisis, Inc., and Dennis Levy, executive director at the Black and Latino AIDS Coalition. Their discussion follows.
BP: Should HIV transmission be monitored by New York State and how?
Dennis: If by that you mean should they be tracked, I think they should be. And I think we could use name reporting to do that.
Catherine: I think that it would be incredibly useful to have a better picture of the epidemic through some form of surveillance. I think that the best way to get a good picture would be through blind surveillance. If HIV tests are reported, it can be done as efficiently -- if not more efficiently -- through a unique identifier system than through names reporting..
Derek: The answer to the question is yes, we do need to monitor HIV. When you say HIV transmission, I think what we mean is both the number of newly acquired infections that become identified when people get tested, and also the population of people who know their status, who are in medical care, but who have not yet progressed to AIDS. So, I think we're talking about getting a picture of the epidemic that includes both of those pieces of information.
How to do it is a very complicated issue. There's a variety of things that need to be done. Catherine brought up the (sero) surveys. That's a very important idea. We need more of them.
GMHC believes that we need to have a surveillance system that does monitor the entire epidemic -- the entire population of infected people. And that it should be done best through a unique identifier.
Dennis: From our position, we see HIV as a sexually transmitted disease. And as such, we think that it should be tracked just like other sexually transmitted diseases have in the past in our community. We think that an adequate job has been done using the system of names reporting. When we get into a discussion about unique identifiers, we simply complicate this issue and spend a lot of time arguing on which way to do this when we could go ahead and implement a names reporting system, possibly save lives, and work on prevention.
Catherine: There is no connection, necessarily, between surveillance and saving lives. The primary goal of testing is to make sure that people know their (sero) status, and then act on that information. This involves both getting access to health care and taking measures to make sure that they don't further transmit the virus. There is nothing about names reporting or surveillance, that's going to ensure that these things happen. People are concerned that services in many parts of the country are not being targeted to high-risk communities that we have already identified and do not target behaviors that we know to transmit the virus such as IV drug use. Dennis' position hinges, to some extent, on assumptions about the history of reporting sexually transmitted diseases that are not accurate.
With all due respect to you, Dennis, your position reflects a kind of romanticized version of the reporting of sexually transmitted diseases. It's fairly well documented that doctors frequently do not comply with reporting cases of syphilis or gonorrhea or a range of other reportable illnesses either because they simply are traditionally not good at doing that kind of thing, or they do not want to compromise their relationship with their patient. So I think that if we don't have a system that's going to accurately identify and measure the trends and the concentrations of the epidemic, then we are wasting time and money. When many people in the community or advocates say that names reporting is going to effectively alienate a large number of people who feel mistrustful or hostile toward government monitoring, that needs to be taken seriously.
BP: Should mandatory partner notification be implemented as a preventative measure? And if not, what should we do to help prevent further transmission?
Derek: Well, this is a very tough issue. We all want people who are infected to learn how to reduce risks to their partner, how to disclose their status to their lovers, to their wives, their husbands.The problem is how do you do it. We're all struggling with that. The idea of a mandatory partner notification program is based on a few ideas that I'm not sure are sound. One is that mandatory partner notification always depends on an infected individual's willingness to disclose their partners to government workers who would presumably be doing this work. It's fundamentally a voluntary system.
Another question is who is best able to help infected people go through this process? It's our belief that the best way is to use the current system of care: doctors, social workers, nurses and community-based organizations (CBOs), people who already have established trust with infected people. It doesn't seem possible to us to create a new state agency to be responsible for notifications of, potentially, several hundred thousand people for many years.
Regarding syphilis, we do have to recognize that it's at an all-time historic low in the country. Something positive has happened regarding syphilis, but AIDS is not a syphilis outbreak. Comparing the two really obscures more than it reveals. When someone has syphilis, they can be cured with one shot. There is no cure for HIV, and people will remain infectious for many years. So it adds a level of complexity that I'm not sure the syphilis model can accommodate. I don't have the exact answer here. I do think we need better prevention programs. And I will leave it with that.
Catherine: I absolutely agree that to use the model of intervention with sexually transmitted diseases like syphilis for what should happen with HIV is ill advised. And I think the reasons that Derek identified are probably the most important ones.
I also agree, for the most part, that partner notification by its nature hinges on the willingness and cooperation of the patient to provide the names of their contacts.
The cases for which this is not true concern known spouses. Persons who have formalized their relationships are in a slightly different position. There are several studies now that address the risk of domestic violence in involuntary partner notification. This has to be taken seriously when we talk about mandating it.
So a clear refusal to notify partners is not always based on a lack of willingness to act responsibly. The failure there has more to do with a need to counsel and train providers rather than some need to change the current system.
Dennis: First of all, I want to respond to the comments made by Derek and Catherine about the fact that there really is no comparison between syphilis and AIDS. I concur. What we're talking about is a model of surveillance that has worked well enough in the past to use it with HIV because they are both sexually transmitted diseases, regardless of the differences between them.
I support partner notification. It's a way that we could slow the epidemic down. It's been our experience as educators in the Black and Latino communities that many Black and Latino heterosexuals will not take an HIV test regardless of whether or not name reporting or anonymous testing were linked to it. It's unfortunate, but it's a reality. People have so many other problems to contend with, so who wants to add AIDS to the list?
Another reality is that many people in poor minority communities are uninformed about their HIV status, and subsequently, they are infecting unsuspecting people with this virus. That's why we support some type of partner tracing. We know you can't mandate this, but we can at least put counselors and other professionals at the disposal of individuals who have tested positive to assist them and help them trace their sexual partners. People would become aware that they have been exposed, resources could be put at their disposal, and this would assist a person to not pass it on to others unsuspectingly.
Catherine: Dennis, the first part of the point you made is an excellent and critical one that is not being addressed in any of these discussions about names reporting or unique identifiers: the ongoing dilemma that the majority of people in some communities aren't bothering to get tested at all. We are not addressing what needs to be done to encourage people to get tested. We also need to consider whether changing the system to one that's more intrusive will further deter people from being tested.
The problem that I have with what you've said is that there's not a clear connection between your point and the conclusion that we then need to be reporting by names. If in fact, people aren't getting tested, then there's no one to report or contact. Why this is happening is something that deserves some real study, not some sort of half-baked, close-ended multiple choice survey that asks people questions that serve a particular purpose, but don't get to the fundamental reasons why people are avoiding the public health care system.
Dennis: There most certainly is a disconnect. And it was purposeful. Instead of putting so much time and energy into name reporting and partner notification, we would like to put more energy into increased funding for education and prevention. That's where we would like focus to be placed. However, since reporting and notification have become such major issues, we see a need for some kind of increased surveillance, and think that partner notification could help to slow down the spread of this virus.
BP: Why is this issue such a divisive one among HIV providers and those infected with the virus? Are there any clear and consistent divisions based upon factors like race, economic status, sexual orientation, sex, or other cultural factors?
Dennis: I'm sure there are a lot of them, though I haven't given it much thought. I think everybody can agree on the fact that HIV seems to have settled in poor minority communities, or at least that seems to be what some of the statistics reflect. According to the Centers for Disease Control and Prevention, AIDS cases diagnosed in 1996 rose about 19 percent among heterosexual Black men and 12 percent among heterosexual Black women. There are somewhat different perspectives when we're talking about poor minority communities as opposed to white, gay, and lesbian communities. As I stated before, in poor minority communities, we're confronted with a number of life-threatening problems that tend to make AIDS and HIV seem like just another problem among many confronting us to be put into some kind of perspective and prioritized.
We are not able to focus on AIDS as the greatest (and potentially only) life threatening issue like the gay, white community did in the early '80s. In our community, it's just another life-threatening problem among many.
Derek: I'm not sure what the answer is to this question. I think that everybody shares the common goal, a consensus to develop a system that will help us fight the epidemic today and into the future, but there's some debate about the best way to go about it and what that program should look like.
I don't know if there are any real clear breakdowns. Sometimes the way that this issue gets described can obscure something important. The majority of GMHC's clients are people of color, and there are a large number of gay people who are Black and Latino or are from other ethnic groups. The categories aren't always so rigid.
Catherine: I actually have a fairly strong opinion on this which became clear to me yesterday after listening to testimony on this issue. Dennis was the only person of color testifying; he was the exception in that most of the people who testified were white people making six-figure salaries. I do think that class is clearly an issue here that most people are reluctant to see, let alone to discuss. Recently, Jessie Jackson said that people want to discuss class even less than they want to discuss race.
Although GMHC does have a range of different clients, those clients -- and tell me if I'm wrong -- were not polled and do not have a say in policy decisions made by the agency. Policy makers, almost across the board, are rarely involved in direct services to people in low-income communities. During the testimony, experts spoke on behalf of the gay community about the need for names reporting and how folks that oppose it are behind the times.
When people are having private conversations, basically they occur between people of the same class (upper-middle or upper class), and it really does skew the analysis. In these social circles where discussions about potential policy occur, it's very rare for the participants to include people who build elevators, construction workers, or people who serve meat at Wendy's.
When you have lived a privileged life where you have never had to get in a line and deal with a public entity to get public assistance, have never had to deal with a public agency to get your health care or your disability benefits, and have never passed through the criminal justice system or been the member of a community in which 20 percent of adult males pass through the criminal justice system, I think you have absolutely no awareness of how public intervention in your life affects you.
Having spent the first 10 years of my career representing people in the criminal justice system and people in low-income communities, I know that, representing those folks has absolutely nothing to do with living that experience. But I do know that most of the folks that I dealt with viewed the government, public officials, and the criminal justice and legal systems as an adversary and an enemy, not a friend. There was absolutely nothing in their life experiences that would have led them to conclude otherwise.
Derek: I do agree that there is an important class dimension to this. One point that people sometimes miss is that there are a variety of sources of information about the private lives of individuals that are available in our society. Medical records are traded freely with a minimum of regulation. It's also important to note that there are about 125,000 people with HIV on Medicaid in New York State. Their names are already known to the state. The only people in our society who can truly remain invisible to the government are ones who can pay in cash and who do not have to rely on public assistance. We need to keep these factors in mind as we move ahead.
Dennis: Ditto to both of those comments. Many people in our community are on Medicaid. Their name is already located in some state registry, many of them have also been incarcerated, so their name is all around the place. I think these points need to be understood. There are class differences, and therefore, different perspectives.
BP: Why has this issue has resurfaced in such a major way at this point in time?
Derek: The fundamental answer here is that the epidemic has changed in a very important way. Here in New York State, roughly, we had a 50 percent drop in deaths last year. This advance is attributed to the new treatment therapies and better medical care. If you look at the number of deaths that occurred last year, they were fewer than they were in 1986. If you look at the data we collect now, it says the epidemic is smaller than it was in 1986, but of course, we know that's not true.
The way we monitor the epidemic now is giving a false view of it. That's why this issue is on the agenda. Historically, the way we've monitored the epidemic in New York State is to count the number of people who become seriously ill with AIDS or who die from AIDS. Since there are far fewer AIDS-related illnesses and deaths, we are learning about a smaller and smaller slice of the epidemic. It's reached a different level given the significant changes in the epidemic itself.
Dennis: I agree with what Derek said. Let me also add that some of the new medical developments that prolong life and reduce death for particular PWAs have obscured where the epidemic is moving and how significantly it's moving in that direction. New HIV infections are very high among heterosexual people of color and are exploding among of women of color. So our community supports a better way of tracking and assessing where this epidemic is now, because we think it can mean more dollars for education and prevention efforts for us.
In addition, cases like Nushawn Williams -- the young black man who allegedly infected some people in upstate New York -- helped to move this issue to the forefront. But from the standpoint of the minority community, we know of hundreds of cases of Nushawn Williams.
Catherine: I do think that the Nushawn Williams case did raise the heat under some of this, and it's extremely troubling to me the way that incident is viewed, characterized, and the assumptions that have gone into it. Considering the complete lack of information from Mr. Williams himself, assumptions about who did what intentionally to whom does say something about the class and race assumptions and bias that affect the way we do public health.
The assumptions about money being connected to names reporting is a misapprehension of what the reality is likely to be. There is no history of a clear and direct connection between affected communities, counting numbers, and then consequent focusing of resources. I think that one of the reasons why it has become such a hot issue here is that people who track developments in other states have noticed that 10 of the states that adopted names reporting went on to legislatively ban anonymous testing.
Slightly fewer than half the states haven't gone this way. As they have on other AIDS policies, people look to New York as having the potential to influence what the rest of the country does. So that's an important reason why people are focused on the debate here.
BP: What would a good legislative bill look like? What would be the components?
Derek: Well, it's hard to talk about good bills when there's so many bad ones at the moment. But in my fantasy world, and I do believe it's a delusion at this point, I would like to see a straight surveillance bill that would start monitoring HIV in a similar way to AIDS, with some differences, and without any other issues attached. I think that it's extremely unlikely to happen though.
The linkages I would like to see made would deal with the partner notification issue. How do we notify the people that Dennis has talked about? It's a legitimate concern and issue. I'm not sure if we know how to write a law that would do it, but I'd like to see that issue tackled in a serious way.
I'd like to see the state invest a significant amount of money in promoting HIV testing and dealing with HIV-related stigma through media campaigns, public education, and through community-based organizations, all over the state in all different communities that are struggling with this. I'd like to see more money guaranteed for treatment and prevention.
We have managed care going on, and the state funding for ADAP will expire next year. Things are on the horizon that could jeopardize New York's commitment to providing care for infected people. We'll need to deal with that as well.
Dennis: I support the bill that Nettie Myerson (Democrat) submitted. I don't see anything wrong with the bare essentials of the bill. When it's determined that a person is infected with HIV, afflicted with AIDS, or is diagnosed as having an HIV-related illness, that case gets reported to a local municipal health commissioner. If it's determined that the case merits investigation to protect the public health, then the health commissioner must notify the known sexual partners and spouses of the tested individual.
Catherine: If the goal of the legislation is to get better information about the reach of the epidemic it won't look anything like what's pending out there right now. It must clearly identify the goals of surveillance -- to get an accurate picture (not an exact count) of the extent, the reach, and the level of HIV infection in all communities. In doing that, whether it's through reporting of positive test results and/or other forms of blind surveillance, it will not involve a connection between the individual's identification code and any name or address or so on, but will include the kind of information that we really need for surveillance -- sex, age, risk factors, and the like.
There will be no connection between surveillance and partner notification. It will include the creation of firewalls between collection of this information and any ability to use it in any other way.
One thing that would be useful that both the federal and state public health officials have generally refused to do, is to take a public position against instances of discrimination. Traditionally, the City and State Departments of Health have been completely unwilling to take public positions on stigmatizing proposals introduced by other government entities or private officials. They've been unwilling to support litigation or other proposals that address the stigma that drives people underground. And they do not go behind the walls of institutions, like prisons, where huge concentrations of poor and affected people are housed, and are often denied access to basic treatments that will protect their health. So we have a long list. I don't know that all can or will be addressed by legislation.