What's In A Name?
Contact Tracing and Names Reporting In New York State
Mark waited for his test results. He didn't think he was positive, but he was nervous nonetheless. His new boyfriend, Jon, had urged him to get tested. Before Jon, there had been Paul, a handsome high school senior who was young, gay, and for the most part cautious, and who had been Mark's steady boyfriend for six months. Mark's parents didn't know about Paul or Jon. For that matter, Mark's parents didn't know that he was gay. Jon's and Paul's parents didn't know about their sons either.
Fairly certain that he was negative, Mark hadn't paid very close attention to what the counselor had told him before drawing his blood. Now, two weeks later, he wished that he had the results already. It wasn't that he didn't practice safer sex, but he remembered the night the condom broke. And it wasn't with Jon or Paul. It was just one of those nights and one of those things.
Finally, the counselor called Mark into the room; the results were in. Despite his confidence, Mark was suddenly seized by a great fear. When the counselor told him that he was positive, the only thing he heard was his heart in his ears. And somewhere between the heartbeats, he heard the counselor ask for the names of his partners.
Getting tested. It's almost a rite of passage. Many gay men have been doing it for more than a decade.
But now it's 1999, and Nettie Mayersohn's law requiring names reporting and partner notification has just gone into effect. What does this mean for Mark? For his partners? Who gets his name? Where does it go? What if Jon's or Paul's parents are home when a public health rep knocks on the door? What will they say to a mom or dad demanding to know why the department of health is trying to reach them?
What does the new law mean for HIV-positive people living and dating in New York State?
Once a leader in progressive HIV/AIDS policies, New York State has now joined the nationwide movement away from protecting individual privacy and the confidentiality of HIV-related information. Leading the charge is a state legislator from the New York City borough of Queens. Assemblymember Nettie Mayersohn (D-Queens) has consistently argued that one individual's right to "know" about HIV exposure far outweighs another individual's right to privacy.
Briefly, Mayersohn and other policy makers believe that HIV prevention efforts to date have failed in the fight against AIDS, and that strict confidentiality laws are in large part to blame. And, to put it bluntly, she thinks that we should no longer be concerned about the stigma and fear associated with a positive test result, but should treat HIV/AIDS strictly as a medical condition. To that end, she and other like-minded policy makers support testing, reporting, and notifying partners as primary prevention strategies.
Placing notification at the top of the prevention priority list, however, is a strategy with a great cost -- on average, $5,000 to notify each contact. For proponents of notification to argue that monies would not be diverted from other critical HIV/AIDS services is outlandish.
The greatest irony is that partner notification is being given priority over other, currently underfunded prevention programs. Funding earmarked for contact tracing and/or partner notification would be better spent on needle exchange and prevention education programs. But these programs, along with those that help those already infected, continue to go begging. Indeed, direct HIV/AIDS services have not seen a real increase since Governor George Pataki took office in 1994.
Not only does shifting gears and strategies come at a great financial cost, it also takes a great emotional toll. It comes back to the issue of privacy and what that means for individuals who know that they are HIV-positive and for those who do not know their status. The danger is that the loss of privacy will frighten people away from the very system ostensibly designed to help them. In other words, fewer people who are at risk may be willing to get tested, knowing that if they test positive their names will be placed on a government list for the rest of their lives and that their partners will be notified that they have been exposed to the virus.
Many in the HIV/AIDS community argue that the new law is self-defeating. If people are dissuaded from being tested, they are unable to receive the early treatment that is so important in prolonging life and health. And, unaware of their own HIV-positive status, they may continue to put other people at risk through needle sharing and unsafe sex practices.
Where Did It Come From?
Before I describe in detail the provisions of the new law, I want to stress that this prevention strategy did not drop out of the sky. It was and is part of a concerted effort to change the way public health officials and policy makers deal with HIV and AIDS prevention.
The erosion of privacy rights began with the passage of a 1996 law, also sponsored by Assemblymember Mayersohn, that for the first time called for the widespread, involuntary, mandatory HIV testing of one segment of New York State's population -- new mothers.
The state began testing new moms without consent in 1997 by testing their newborns. While the expressed intent was to determine if the infants were HIV-infected, in fact the babies were being tested at birth for their mothers' HIV antibodies. Thus the reality was that the tests revealed the HIV status of the mothers -- and of the mothers only -- effectively circumventing the legal requirement of informed consent.
Informed consent means that a person -- in this case a new mother -- cannot be tested until she has been informed in pre-test counseling about a variety of issues, including her rights. Now an advisory panel to the national Institute of Medicine is calling for the routine (read mandatory) HIV testing of pregnant women without pre-test counseling. If realized, this policy would mean that pregnant women would no longer be able to give informed consent prior to being tested for HIV. The purpose of prenatal testing is to enable doctors to administer AZT to pregnant positive women and thus decrease the risk of transmission to the fetus. But nowhere in the debate about this practice has there been a serious discussion of a woman's right to choose her own treatment options. (Federal guidelines calling for the administering of AZT during pregnancy already potentially limit women's own treatment options later down the line). [Mandatory testing of newborns is discussed in greater detail in "Whose Virus Is It Anyway?"]
Now, two years later, on July 7, 1998, the New York State Legislature enacted the most sweeping HIV reporting and contact tracing law in the nation. While many states have reporting and partner notification requirements, none of those link the two together and mandate notification. Further, not all states report HIV by name. California, another state with a significant HIV and AIDS population, recently passed a bill that would establish a unique identifier system for reporting HIV while protecting the confidentiality of people who test positive. Ms. Mayersohn was able to convince the governor of that state of the importance and validity of New York's new law. She argued that not reporting HIV by name would undermine contact tracing efforts and persuaded the governor to veto the legislation.
The U.S. Congress has also been entertaining a similar measure on the federal level. Assemblymember Mayersohn has been to Washington on several occasions to push for adoption of the New York model on a national level.
Thus New York, once a model for the nation on progressive and compassionate AIDS policy, is now in danger of becoming a model on reporting and notification.
What Does It Mean?
So what is this new model and what does it mean for the average HIV-infected New Yorker? Put simply, the names of people with HIV or AIDS will be reported to the state by their doctors or their testing facilities. Positive people will be asked for the names of their sexual or needle-sharing partners, and the state will notify these contacts that they have been exposed to HIV, although they will not be told the names of the people who reported them.
But how will it work? As always, the devil is in the details. And not all of those details are yet known.
The new law is scheduled to go into effect in January 1999, but at the time of this writing the state has still not released its draft recommendations for the rules and regulations under which it will implement the law's provisions. This means that the state will most probably either postpone the law's implementation or implement it on an "emergency" basis. The latter would effectively circumvent the public's right to comment on the regulations and the state's ability to take issues raised in those comments into consideration and to make appropriate changes prior to implementation.
So what details do we know already?
Beginning in January of this year, doctors and other medical practitioners, medical labs, and coroners must report the names of those who are HIV-infected to the state Department of Health. Prior to the passage of this law, AIDS was reportable to the Department of Health, but HIV was not. Now, reporting will be required throughout the progression of the disease -- upon initial diagnosis of HIV, upon initial diagnosis of an HIV-related illness, and/or at the onset of AIDS. In other words, the law will attempt to capture the names of all HIV-infected New Yorkers -- even those who got tested prior to enactment of this law with the understanding that their names would not be reported to the state until the onset of AIDS.
In addition, each report must include the names of contacts known or provided to the physician/practitioner. Who is a contact? Until now, a contact has been presumed to be a spouse or a known sex or needle-sharing partner. The new law, however, greatly broadens that definition to include anyone the patient may have exposed to HIV "under circumstances that present a risk of transmission." We do not know who else that may include, but we do know that it greatly increases the threat of potential breaches of confidentiality.
Speaking of confidentiality, what does the new law have to say about the right of HIV-positive people to keep their status to themselves? The language in the new law states that all medical information must be kept confidential, "except in so far as is necessary to carry out the provisions" of the new law. What does that mean? No one knows for sure. But it does create a legal loophole that could serve as the basis for undermining individual rights to privacy.
How Will It Work?
This seemingly straightforward bill is not as simple as it first appears. In fact, the many issues raised by the new legislation demonstrate the very complicated and complex nature of HIV disease and care.
It is important to note that no one will be forced to disclose the names of their partners to their doctors or anyone else. In fact, no criminal or civil liability can be charged against any HIV-infected individual who fails to cooperate with this new law.
That doesn't mean that privacy and confidentiality are still protected. A physician who knows the spouse or partner of an infected individual is required by law to report that "contact" to the state, even if the infected individual refuses to disclose any names. So, for example, if a pregnant woman who has been seeking prenatal care chooses to get tested and has listed the baby's father's name on her medical records, he is now a known contact.
Further, if doctors do not report the names of HIV-infected patients to the state, they can be subject to professional misconduct and disciplinary hearings. This raises another whole issue about maintaining the integrity of the physician-patient relationship and the trust needed between the two to ensure that the patient receives the best care possible. At the same time, any doctor or other person who is required to carry out provisions of this law and does so in "good faith" is immune from civil or criminal liability. This includes protection from charges of libel, slander, or violation of right of privacy.
So what happens with the report when it is sent to the state?
Contact tracing has long been done uniformly for other sexually transmitted diseases and on a voluntary basis for HIV in New York State. Now it will be mandatory in cases in which the local county health department believes it is "merited." Since the stated purpose of HIV reporting is not for surveillance (although we certainly assume and hope that the state will now track trends and numbers in the epidemic), the state will then forward the information to the local county health department for contact tracing.
Contact tracing means that a public health representative will notify the infected individual's partners that they may have been exposed to HIV. They must try to do it in person, but they may send a letter to a contact's home or call on the phone and ask that the contact come in for an appointment. Each contact will be informed of "the nature of HIV, the known routes of transmission of the virus, the risks of prenatal and perinatal transmission, actions he or she can take to limit further transmission of the virus, facilities or community-based organizations which are accessible to the person that provide counseling, medical care and treatment, further information or other appropriate services for persons infected with HIV."
What Should We Look Out For?Public health representatives, doctors, or other medical providers may not ever reveal the identity of the HIV-infected individual to a contact.
That's a good thing, but there is still no guarantee that the HIV-infected individual's privacy will be protected. For individuals who have had only one partner, for example, it will be easy for the contact to deduce the identity of the HIV-infected individual.
The new law requires that the Department of Health, in consultation with the Office for the Prevention of Domestic Violence and state and community organizations, develop a protocol to identify and assess individuals at risk of domestic violence. The possibility of domestic violence is very real for both HIV-positive individuals and their contacts, and the regulations that we have not yet seen will need to clarify if risk of domestic violence would prohibit partner notification for the individual(s) at risk (see "Hitting Home").
In response to those who fear that this new law will frighten people at risk away from testing, the law ensures that anonymous testing sites will be maintained in New York State. But this only postpones the inevitable. If someone tests positive, no matter how anonymously, that person will be reported to the state as soon as he or she seeks medical care for HIV, and the notification/contact tracing process may occur. We certainly want individuals to begin medical treatment as soon as possible, but again the fear is that people may delay treatment until they get sick in order to avoid being put on the government's list .... with its tremendous and potentially harmful loss of privacy.
HIV-infected New Yorkers are sliding down this slipperily slope of privacy losses, and the downward momentum is increasing. Already a battle is heating up in Albany to require HIV-infected individuals to disclose their HIV status to potential partners or face criminal penalties (see "It Oughtta Be a Crime?"). Each disclosure, whether to a potential sexual partner or a contact who has inferred an individual's identity, increases the risk of wholesale loss of privacy protections. Partners, friends, confidants, and neighbors are not bound by any confidentiality laws. While doctors and public health officials may not legally tell anyone your status, friends can.
This is not the only proposal in Albany that would affect New Yorkers with HIV, and confidentiality is not the only issue. There are other initiatives on the table that would further chip away at individual rights to choice, privacy, and control over their right to get tested or not. In recent legislative sessions, both the Assembly and Senate have introduced several bills that in one form or another mandate involuntary testing for various segments of the population, particularly inmates and criminal defendants.
These initiatives perpetuate persistent misconceptions about transmission and prevention in the fight against HIV and AIDS. HIV is not easily transmittable. It cannot be transmitted through an inmate spitting, scratching, or biting a guard during a fight, a myth that is frequently cited by the correctional community and print media to support legally mandated involuntary testing of an inmate. Such legislation is not only unnecessary, it sends a dangerous public health message regarding the risk of transmission of HIV.
Does politics come before public health? And if so, at what cost? Only time will tell how far-reaching and how damaging the effects of this new law will be for HIV-positive New Yorkers.
On December 10, as this issue of Body Positive was going to press, the Centers for Disease Control and Prevention issued a draft of its new guidelines for surveillance of HIV and AIDS. The guidelines would revise the current rules, which require the reporting only of cases of full-blown AIDS, to require all states to adopt HIV reporting systems in which state health authorities collect the name or coded identifier of anyone who tests HIV-positive.
In a move that worries some activists, the CDC has come down on the side of names reporting rather than the use of unique identifiers. Under "Recommended Surveillance Practices," the draft guidelines state, "CDC advises that State and local surveillance programs use the same name-based approach for HIV surveillance as is currently used for AIDS surveillance nationwide."
"HIV names reporting is an oxymoron," according to Steven Fisher, Communications Director of the Washington, D.C.-based AIDS Action. "By discouraging testing, it won't produce the names that such a system depends upon for success. Without better access to health care, names reporting is the Titanic all over again -- we're creating passenger lists without providing enough lifeboats."
The public has until January 11 to comment on the proposed guidelines. More than thirty states and territories already have names-based reporting systems in use or, like New York, in the planning stages.
Illustrations by Audrey Frank Anastasi
This article was provided by Body Positive. It is a part of the publication Body Positive.