HIV PARTNER NOTIFICATION: Why Coercion Won't Work
TABLE OF CONTENTS
I. SUMMARYThe term "partner notification" refers to activities aimed at identifying sex and/or needlesharing partners of someone with a disease communicable through sex or shared needles and informing them that they have been exposed to the disease.1 Little empirical work exists that effectively evaluates the costs and benefits of partner notification. Voluntary partner notification plans, which encourage an infected individual to notify his or her partners and provide training and support, are one component of effective HIV prevention and treatment. However, the available evidence does not justify coercive partner notification. Instead, the scientific research shows that partner notification that is not voluntary or that is linked to HIV surveillance through name reporting will not work.
In the "traditional" context of partner notification for control of STDs, partner notification programs have frequently failed. Partner notification has not been effective in controlling recent STD outbreaks which are the result of high-risk activities similar to those driving the largest number of new cases of HIV infection. The evidence also shows that partner notification does little to change the high risk behavior of those most likely to contract HIV. At the same time, coercive partner notification diverts resources from programs that do work. Resources for treatment and prevention services, which result in more people being treated more effectively and fewer people becoming infected, are already insufficient.
The ACLU recognizes that it is extremely important that individuals who test positive for HIV notify any partners who have been placed at risk. The ACLU therefore supports voluntary partner notification plans. But the ACLU adamantly opposes state-mandated coercive partner notification, including plans that require individuals with HIV to provide the names of their partners to public health authorities and/or require public health authorities to notify partners without the consent of the patient.
II. INTRODUCTIONPartner notification emerged as a public health tool in the United States in the 1930's. The rationale behind partner notification is that it allows identification, treatment, and education of individuals who have been exposed to a communicable disease, preventing the spread of the disease and helping people understand how to avoid future infection.2 After the discovery of penicillin as a cure of gonorrhea and syphilis, partner notification became a standard strategy for breaking the chain of transmission of those and other diseases. Partners were contacted by public health officers and immediately treated so that they could not infect others.
Partner notification has not been used systematically with HIV. There are several reasons for this: lack of a drug therapy to cure HIV or prevent transmission, a long incubation period which makes it difficult for patients to name and locate past partners, and serious concerns about confidentiality and social stigma. For these reasons, there has been broad consensus that coercive partner notification is not warranted with HIV.
Recent calls for aggressive and coercive partner notification have been fueled at least in part by the development of drug therapies for treating HIV. These therapies are helping people with HIV live longer and healthier lives. Research suggests that the new drug therapies may be more effective if begun soon after infection. However, the new drug therapies do not offer a cure, and individuals under treatment can still infect others.
Another factor that has changed in recent years is the demographics of HIV. While gay and bisexual men made up the largest at-risk population in the first decade of the AIDS epidemic, in the second decade new cases of HIV are increasingly occurring among people of color and injection drug users.3 Educational outreach to these groups has been more difficult and less effective than it was in gay communities, and partner notification has been suggested by some as an alternative to targeted prevention education.4 At the same time, frank, culturally appropriate education and counseling and other prevention measures, such as needle exchange and drug treatment have been largely ignored or rejected on ideological grounds.
III. THE EMERGENCE OF NEW PROPOSALS FOR COERCIVE
HIV PARTNER NOTIFICATIONHIV partner notification policies in effect across the country take many different forms. Some states have formulated programs that heed the Centers for Disease Control and Prevention (CDC) guidelines. These guidelines encourage states to devise partner notification services that are voluntary, confidential, conducted in a collegial and cooperative manner, and are sensitive to potential consequences of notification, such as damage to relationships and potential violence.5 Other states, however, have attempted to eliminate the inherently voluntary aspect of notification programs with state-mandated requirements.
Recently, there have been calls for unprecedented coercion in partner notification programs, as well as increased attention to programs which already limit voluntary and anonymous partner notification.
A. Existing policies
Some states impose a legal obligation on people infected with HIV to notify their partners. For example, in Indiana, HIV positive individuals who fail to notify present and past partners may be subject to a penalty of 180 days in jail and/or a fine of $1,000.6 In Michigan, health care providers administering HIV tests are required to refer clients testing positive to the local health department if they believe that the individual needs assistance with partner notification. The local health department, in turn, informs individuals that they are legally obligated to notify their partners and the health department is required to notify them as well.7
Some states, like Texas, require health care providers to notify partners of all HIV positive patients regardless of whether the patient has done the notification.8 Other states authorize, but do not require, physicians and/or public health officials to notify partners of individuals who have tested positive for HIV, even without the consent of the patient.9 These laws authorize dramatic departures from the confidentiality that patients expect in their relationship with a health care provider.
Though protecting the welfare of an unknowingly exposed partner may argue in favor of non-consensual disclosure under limited circumstances, existing and proposed legislation in this area is often far too broad.10
B. Recent proposals for state-mandated partner notification
are extraordinarily coerciveProposals in Puerto Rico in 1997 and in New York this year mark a move toward coercion that threatens to set back public health efforts to prevent the spread of HIV.
In 1997, the Puerto Rico Health Department promulgated regulations requiring individuals testing positive for HIV to provide the health department with a list of their sex partners, including addresses and phone numbers. Failure to comply would have been punishable by fines of up to $5,000. After public outcry, the Health Department annulled the regulation and announced that it would convert its partner notification proposal into a voluntary program.11
An even harsher proposal presently pending in the New York State Assembly would make it a felony for an individual testing positive for HIV to fail to disclose the names of his or her sex and needle-sharing partners to the health department, or to provide information about such partners known to be false.12 Other proposed legislation in New York would require that the names of all individuals who test positive for HIV or are diagnosed with AIDS or an HIV-related illness be turned over to local health offices. The local health commissioner would then be required to notify the spouse and known sexual partners of the patient. The proposed legislation places no limits on the local health commissioner's power to investigate in order to identify and notify partners.13
These proposals represent a new and misguided move toward coercion as a means of stemming the spread of HIV.
IV. COERCIVE PARTNER NOTIFICATION IS BAD PUBLIC POLICYMany calls for coercive, state-mandated partner notification policies are based on claims that partner notification is a "traditional" public health tool used to prevent the spread of STDs. Proponents of coercive partner notification for HIV argue that public health efforts to prevent the spread of HIV must use such "proven tools" of prevention. But this argument makes at least two false assumptions: 1) that coercive partner notification measures that are being implemented or proposed in the context of HIV infection are similar to "traditional" public health strategies; and 2) that "traditional" strategies have been effective in controlling other communicable diseases.
A. Public health policy makers have always emphasized that partner notification must protect confidentiality and must be voluntary in order to be effective
Partner notification strategies that abandon anonymity and attempt to coerce participation in notification entail "a rejection of the lessons of four decades of contact tracing, lessons that were rooted in the pragmatics of STD control."14
When partner notification was first considered as a public health tool to fight the spread of STDs, there was great debate about names based case reporting and coercive partner notification for "traditional" disease prevention. Even though this debate occurred prior to the development of our modern understanding of the importance of privacy as a right, there was strong support for maintaining the anonymity of patients diagnosed with STDs and designing programs that would encourage patients to participate voluntarily in the public health system.15 The ability of a person infected with an STD to maintain his or her anonymity while receiving treatment and counseling has always been, and remains, an important part of the public health equation for determining appropriate methods of disease prevention.16
In part, this reflects an obvious reality: no matter what a law says, as a practical matter, no one can be forced to provide information about sexual or needle-sharing partners if he or she is not willing to do so. Thus, while partner notification has always been susceptible to coercive tactics, the necessity of voluntary cooperation of an infected person in notifying his or her partners has not been disputed in traditional public health strategies.17
A 1962 report produced under the auspices of the former U.S. Department of Health, Education and Welfare, identified the key element of the success or failure of STD control programs as the ability of public health interviewers to gain the confidence of patients so as to elicit information about their sexual contacts.18
The Department of Health and Human Services 1985 guidelines for STD partner notification programs reiterated the importance of voluntary patient cooperation in the disease intervention process.19
B. Partner notification frequently has been unsuccessful as a public health tool in campaigns to eradicate STDs
The effectiveness of partner notification in HIV prevention must be evaluated independently from its effectiveness in other contexts. However, since there is little evidence about its effectiveness with HIV, much support for state-mandated partner notification is based on its supposed effectiveness in preventing the spreads of STDs. But an evaluation of the efficacy of partner notification in controlling STDs tells a different story. Partner notification has clearly not been successful in controlling some STD outbreaks, and even where it has resulted in the successful treatment of some notified partners, there have been serious drawbacks to its use.
In spite of the standard use of partner notification for cases of syphilis and gonorrhea, and the existence of effective treatments for those diseases, the prevalence of syphilis and gonorrhea has increased in recent decades.20 Syphilis is occurring in some parts of the country in epidemic proportions.21 A study by the Centers for Disease Control that evaluated this trend in the late 1980's and early 1990's found that "[t]raditional approaches to the control of syphilis that emphasize partner notification have not been effective in halting this epidemic."22 The CDC determined that one reason for this failure was the fact that syphilis outbreaks affect a large number of people who use illegal drugs and who will not or cannot provide sufficient information for public health officials to find and notify exposed partners.23
The CDC findings echo those of an Oregon study that examined the failure of partner notification to control an outbreak of syphilis in that state.24 Reflecting the national trend, Oregon reported a large number of unlocatable partners, which the study attributed to the long infectious period of the disease and the high incidence of drug use and prostitution among those infected. The Oregon study concluded that the failure of traditional methods to control the syphilis epidemic was of particular concern because many of the risk factors for that epidemic were the same as those for HIV infection.
A 1996 review of the evidence available on the effectiveness of partner notification in controlling STDs points out the basic failings. The study concludes that partner notification is a relatively ineffective means of disease control when sex with anonymous partners is common, when there is considerable delay before contacts can be traced, and when health services are inaccessible or unacceptable to clients.25 Notably, these factors have been among the most prevalent characteristics of the AIDS epidemic. The report also notes that "[s]trikingly absent from the literature are any community-based comparison studies which attempt to evaluate the effectiveness of partner notification in reducing the incidence or prevalence of disease in the community."26 Instead, the success of partner notification has been evaluated in terms of the percentage of named partners that are ultimately notified, which, as the Oregon study notes, is not meaningful when only a small percentage of total exposed partners are likely to be identified in the first place.27
However, the most serious failure of partner notification is not its inability to find people exposed, but its deterrent effect on testing and treatment. It is true of course that STD partner notification programs have led to the testing and treatment of some individuals who might otherwise have gone untreated. But this has come at a significant cost, since partner notification programs have also caused some individuals to avoid being tested for STDs out of fear that they would be asked or required to give information about their sexual contacts.28 These individuals, who would otherwise have received treatment, most likely have instead infected others. And, of course, there has been no partner notification in these cases since there was no STD diagnosis in the first instance.
C. Coerced partner notification would be even less effective in stemming the spread of HIV
There is a fundamental difference between an STD like syphilis on the one hand and HIV on the other - namely, the existence of a medical treatment that renders an infected individual uninfectious. Such a treatment exists for syphilis, but not for HIV. Therefore, partner notification programs have a far greater chance of breaking the chain of transmission with syphilis than with HIV.
In addition, the various risk factors that have been attributed to the failure of partner notification efforts in controlling recent outbreaks of syphilis -- drug dependency, anonymous sex, needle-sharing partners, and the exchange of sex for drugs or money -- are all present among the fastest growing population at risk for contracting HIV.
Moreover, from the early years of the AIDS epidemic, there has been widespread recognition that absent any therapy which eliminates one individual's ability to infect another, a successful response to the epidemic was unavoidably dependent on the willingness of those at risk for infection to voluntarily comply with public health messages.29 HIV public health policy is largely based on encouraging people at high risk of contracting HIV to voluntarily seek testing and modify risky behavior. Voluntary testing and acceptance of public health messages require that those at risk trust and cooperate with public health. And it has long been recognized that coercive strategies such as involuntary partner notification will erode this trust and cooperation.30
Gaining the trust and cooperation of at risk populations is especially challenging with HIV because of deep-seated fears about stigma and discrimination that is often associated with having HIV. Moreover, the populations most affected by HIV - gay men, injection drug users, and people of color - all have experienced long histories of oppression, social stigma, and government-sponsored discrimination. These groups enter the HIV arena predisposed to distrust government representatives of any sort - including public health officials.31
Also, the most prominent means of transmission of HIV are illegal in many parts of the country. Unauthorized injection drug use is a felony in all fifty states. And anal sex is a crime in twenty-one states and Puerto Rico.32 Therefore, forcing individuals to identify those with whom they have had risky contact will often constitute a forced admission of criminal activity.33
It is not surprising, then, that many people at risk for HIV resist involuntary partner notification. For example, 54% of people who tested positive for HIV at three North Carolina health departments refused to participate in a study that would require them to provide the names and locating information on their sex and needle-sharing partners. They feared discrimination and loss of confidentiality for their partners.34 An evaluation of New Jersey's partner notification program reported that clients' negative attitudes about partner notification were due to fear that their anonymity would be compromised or that contacts might retaliate against them.35
Many of those who are resistant to partner notification struggle with substantial fears of discrimination, debilitating social and economic instability, and violence. Their decisions about whether to reveal deeply personal and sometimes embarrassing information about their lives and contacts are often made in the face of limited emotional and economic resources and a daily struggle for survival. The addition of coercive state intervention can be crushing.
In a recent study, 45% of health care providers serving HIV positive women reported that they had patients who feared partner notification becauuse they were afraid of domestic violence.36 One quarter of the providers had patients who were in fact assaulted by their partners upon notification.37 Coercive partner notification can be physically dangerous.
Other populations also deeply fear involuntary partner notification. Among clients of a methadone detoxification program, one study found that 59% of the HIV positive clients said they would not enter treatment if HIV testing and partner notification were required.38 Another analysis of drug users' views about partner notification found that at least 50% of those surveyed identified their distrust of government agencies as a barrier to their participation in partner notification.39 High levels of resistance to partner notification have also been documented among gay and bisexual men.40
Resistance to coercive partner notification is founded in part on suspicion of the means by which involuntary notification occurs. And there is reason to believe that this suspicion has some basis in reality. Though mandatory partner notification schemes typically purport to shield the identities of both patient and partners, breaches of confidentiality by health officials involved in partner notification are not difficult to find. In one incident, public health officers posted a notice on an individual's door indicating that she had been exposed to HIV.41 On another occasion, public health officials found a partner at a bowling alley, identified themselves to the partner's bowling team members as public health authorities, and then proceeded to tell the partner that he had been exposed to HIV.42 The ACLU has documented other examples of violation of the privacy rights of people with HIV by public health officials and law enforcement officers.43
Fear of coercive partner notification is often fed by commentators who link partner notification with names-based HIV case reporting. Many advocates of aggressive partner notification programs call for names based case reporting as a means of implementing partner notification.44 Name reporting is feared by many people at risk for HIV and is opposed by most AIDS advocacy and civil liberties organizations because of its documented deterrent effect on HIV testing.45
Name reporting actually is not necessary for partner notification, whether voluntary or involuntary. Partner notification protocols generally prohibit disclosure of the identity of the person with HIV to the partner. Moreover, the available evidence indicates that anonymous testing provides the best means of conducting effective, voluntary partner notification. People who test anonymously are far more likely to return for their test results than those who test confidentially and provide their name.46 If people do not return for their test results, they cannot be counseled on the importance of notifying their partners if they test positive. In addition, partners identified by anonymous testers are more likely to be located and more likely to be HIV positive than partners identified by confidential testers.47
Analyzing partner notification from the perspective of individuals with HIV rather than from that of their perhaps unknowing partners has been the subject of much criticism. But partners cannot be identified if HIV-infected individuals do not trust the health system enough to seek testing in the first place. The evidence of resistance of high-risk groups to coercive notification efforts demonstrates that if these programs are implemented, people at high risk for HIV infection will be discouraged from voluntarily seeking testing and from cooperating with prevention efforts.
D. The available evidence shows that coercive HIV partner notification programs have not worked
As with partner notification for the control of STDs, the effectiveness of partner notification in controlling HIV infection has not been measured in terms of actual reduction in the incidence or prevalence of HIV in any given community.48 Instead, success in partner notification has largely been defined by the percentage of named contacts that were notified, tested, and found to be HIV positive. But this measure of success ignores substantial evidence that the positive impact of partner notification is limited to a few, specific contexts, and that broad, mandatory implementation is counterproductive from a public health standpoint.
In the first place, mandatory partner notification, whether through requirements aimed at people with HIV or at health care providers, is not enforceable. Many people who participate in partner notification programs simply will not identify partners or will not provide accurate information.49 For example, a study conducted in North Carolina, where failure of people with HIV to contact their partners is a misdemeanor punishable by a fine, a prison term, or both, found that only 7% of HIV positive people taking part in the study succeeded in notifying their partners.50 Even after the remaining study participants were given assistance in notifying partners, 66% of identified partners could not be found.51 In a partner notification program that succeeded in contacting a greater number of named partners, 21% of HIV positive participants still refused to name any partners at all.52
In addition, the available evidence does not support the assumption that partners who are notified and tested reduce high-risk behavior or receive effective treatment, thus reducing transmission of HIV. There is growing evidence that perceived risk of exposure to HIV is unrelated to the likelihood that one will take any given preventative action.53 Instead, it increasingly appears that much more extensive and long-term efforts specifically tailored to the individual needs of those infected with HIV are necessary to change high-risk behavior. In fact, studies that have evaluated behavior change associated with the HIV testing and limited counseling that currently accompanies most partner notification efforts have shown that, unless accompanied by preventive services and intensive counseling, they have little or no effect on changing risk behavior in many high-risk populations.54
There are several reasons for the negligible impact of partner notification on rates of HIV infection. One limitation on the effectiveness of partner notification is the fact that there is no medical treatment that renders a person with HIV uninfectious. And what treatments exist are often not available until years after the individual is infected. A recent review of HIV-positive individuals' access to newer and more effective drug therapies demonstrates that a significant number of HIV-positive individuals do not qualify for state AIDS drug assistance programs or Medicaid early in the course of their disease.55 One medical center in a high-incidence urban area found that the majority of HIV-infected patients tested in the hospital did not even receive adequate referrals for post-discharge care.56 The sad reality is that many people infected with HIV, especially poor people, are not able to access appropriate medical care.57 Thus, even if partners are successfully notified, they may not receive the benefit of new drug therapies, or any other treatment for that matter.
Even those with access to treatment face daunting obstacles. Maintaining the rigorous schedule that new drug therapies require can be extraordinarily difficult and successfully reducing risk behavior is a never-ending battle for many. Many new cases of HIV are occurring among people who struggle with homelessness, drug dependency, domestic violence, mental illness, and/or severe poverty. Measures to stabilize peoples' lives so that treatment is successful and to promote lasting behavior change require a commitment of resources far beyond merely notifying someone of their possible exposure to HIV.58 Services that include readily available treatment for drug dependency and mental illness, housing and job assistance, needle exchange and sustained counseling for risk reduction are necess