HIV Surveillance and Name Reporting: A Public Health Case for Protecting Civil Liberties
HIV SURVEILLANCE AND NAME REPORTING:
A Public Health Case for Protecting Civil Liberties
An American Civil Liberties Union Report
Table of Contents
II. BACKGROUND TO CURRENT DEBATE
III. NAME REPORTING IS BAD PUBLIC POLICY
A. Name Reporting Is Bad Public Policy If it Discourages People from Being Tested for HIV, and the Available Evidence Shows That it Does
B. Testee Fear of HIV Name Reporting Cannot Be Dismissed as Irrational
IV. UNIQUE IDENTIFIERS: A BETTER ALTERNATIVE TO NAME REPORTING
See also THE MARYLAND LESSON: Conducting Effective HIV Surveillance with Unique Identifiers, December 1997
A Public Health Case for Protecting Civil Liberties
Recently, there have been renewed calls for HIV surveillance, and specifically for reporting the names of all those who test positive for HIV to public health authorities. Proponents of HIV surveillance and name reporting frequently suggest that there is a conflict between the privacy rights of individuals who have or may have HIV and the public health needs of the country, and that individual civil liberties must take a back seat in order to effectively battle the spread of HIV and AIDS.
In the public debate concerning society's response to the AIDS epidemic the American Civil Liberties Union has consistently advocated policies that protect the public health while respecting civil liberties and individual privacy. The ACLU recognizes that given the rapid speed with which HIV treatment, the social response to HIV and the disease itself change, every important social and legal policy about HIV must be under constant re- examination. There are no permanent answers. The ACLU also believes that policy must be based on cool examination of the best evidence we have, and not on ideology or visions of the world as we would like it to be. The ACLU is issuing this position paper now because the available evidence shows that, when it comes to reporting the names of people with HIV, there is no conflict between public health and civil liberties. Instead, the available evidence strongly suggests that public health measures that respect the privacy of individuals testing for HIV are more effective means of fighting the spread of HIV than intrusive measures like name reporting. Specifically, as discussed in more detail in this position paper, the evidence indicates that reporting the names of those who test positive for HIV will set back public health efforts. For this reason, the ACLU opposes name reporting.
Renewed calls for HIV surveillance are at least partly the result of new developments in the AIDS epidemic, primarily the emergence of promising new medical treatments. Proponents of name reporting argue that in the face of medical and other developments, it no longer makes sense to systematically track only AIDS cases, which represent the late stages of HIV disease; they argue that we must start to track HIV systematically from the point of infection.
A number of propositions are generally advanced in support of HIV surveillance and name reporting *: 1) there is a need to monitor the spread of HIV and collect more accurate epidemiological data; 2) it would help better target prevention and public health efforts; 3) it would permit individuals with HIV to proactively link to appropriate health care services; 4) it would permit a more efficient allocation of AIDS funding; and 5) concerns about discrimination against people with HIV and AIDS are much reduced as a result of supposedly strong legal protections of confidentiality and against discrimination. Even though there are various methods for HIV surveillance that preserve the privacy of individuals with HIV, surveillance proponents generally argue that reporting the names of individuals who test positive for HIV is necessary for effective HIV surveillance.
The case for HIV surveillance may well be stronger at this juncture of the AIDS epidemic. However, while the reasons cited above may justify increased tracking of cases of HIV infection, they do not support name reporting for several reasons. First, while the goal of increased tracking of HIV infection is to bring those with HIV into the public health system and to obtain more accurate epidemiological data, name reporting will likely have the opposite effect. This is because the available evidence strongly suggests that eliminating anonymous HIV testing will discourage individuals from being tested, thus preventing their entrance into the public health system and hampering HIV tracking.
Second, name reporting is not essential to effectively monitor the epidemic, target prevention, link individuals with HIV to health care, and allocate AIDS funding. Existing HIV tracking mechanisms, including sentinel studies and incidence and prevalence surveys, help to accomplish these goals. And the use of unique identifiers (alphanumerical codes) provides an alternative means of reporting individual cases of HIV without using names.
Third, legal protections for people with HIV appear to be weaker than advocates of name reporting think they are. There are troubling examples of breaches of privacy in spite of the confidentiality protections that accompany name reporting in the states where it presently exists. And recent legal developments indicate that some courts do not believe that the Americans with Disabilities Act provides broad-based protection to people with HIV who are not seriously ill. It is, in short, not accurate to say that the fears of discrimination that appear to drive people away from testing are groundless.
Finally, given that we presently are unable or unwilling to provide access to anti-retroviral therapy and other forms of health care to individuals with HIV who are already seeking treatment, it is hard to see how imposition of names-based reporting is going to result in better health care for those individuals with HIV who are not yet in the health care system.
Therefore, the ACLU opposes name reporting as a means of tracking HIV unless and until: (1) it has been demonstrated that there is a strong need for additional HIV surveillance; (2) there is no alternative means to accomplish this surveillance; (3) we can honestly assure those who will be tested that protection from discrimination is real; and (4) serious efforts to deliver care to those who will be identified will be made. These conditions have not been satisfied.
AIDS first emerged in the early 1980's as a health crisis among gay men, who began experiencing an onset of severe and unexplained health problems that quickly turned fatal. At the time there was no medical understanding of the emerging epidemic, and there was widespread societal fear about possible contagion. AIDS became a marker for gay men, and since many in the population held strong biases against gay people, a social stigma attached to AIDS that set the syndrome apart from other contagious diseases. Gay men with AIDS were fired from their jobs, lost their health insurance and their homes, were turned away by health care providers, and were ostracized by their families, either because of their mysterious health condition, their sexual orientation, or both.
Surveillance of AIDS cases, including reporting the names of persons diagnosed with AIDS to public health authorities, began almost immediately and with little fanfare. There were several reasons for this. First, name reporting was a public health response which had been used with some other sexually transmitted diseases. Second, individuals who were diagnosed with AIDS were already in the late stages of what we now know to be HIV disease, and were for the most part already participating in the health care system. Thus in a real sense they had already been "identified" as persons with AIDS. And finally, although an AIDS diagnosis and public dissemination of that information often triggered a hostile societal response, the harsh reality was that persons diagnosed with AIDS usually died quickly, and the struggle for survival overwhelmed any attempt at leading a "normal life."
HIV was not discovered until 1983, and testing for HIV antibodies became available only in the mid 1980's. At that time, surveillance of cases of HIV infection, as opposed to AIDS diagnosis, was opposed by advocacy groups and public health authorities. There was widespread recognition that gay men, people of color and IV drug users, the sub-populations found to be at highest risk for HIV infection as the epidemic developed, would flee from the public health system if they believed that their names were being reported to government agencies. In the absence of any effective cure or medical treatment for HIV infection, the arguments in favor of HIV surveillance were weak.
In recent years a number of factors have shifted the focus of epidemiological surveillance to the "front end" of the AIDS epidemic, HIV infection. New medical treatments in the form of combination therapy offer greater hope for healthier and longer lives for people with HIV. Research suggests that combination therapy is most effective if begun soon after infection, making it important that therapy be offered to people before they become severely ill. Moreover some research suggests that combination therapy, by drastically reducing the amount of virus an individual carries, lessens infectiousness. 1
For the first time in a decade the number of deaths attributable to AIDS is decreasing. AIDS deaths declined 19 percent in the first nine months of 1996 compared to the same period in 1995. 2 Public health officials, while encouraged by this development, worry that individuals continue to become infected. As medical treatments prolong the lives of people with HIV and significantly delay the amount of time from infection to AIDS diagnosis, surveillance of AIDS cases tells us less and less about how HIV infection is developing and spreading.
In addition, as the AIDS epidemic nears the completion of its second decade, the early societal panic about AIDS has diminished. Legal protections for people with AIDS have improved, thanks largely to the passage of the Americans With Disabilities Act (ADA). Many cities have passed legislation specifically designed to prevent discrimination on the basis of HIV. Prominent celebrities have announced that they are HIV positive, and courageous AIDS activists have won broad admiration in many quarters of society. These developments have somewhat lessened fears that the inevitable result of infection with HIV was complete social isolation.
Against this background, calls for enhanced HIV surveillance, name reporting, and an end to so-called "AIDS exceptionalism" have begun to emerge. 3 Even though there are numerous means of conducting HIV surveillance while maintaining the anonymity of persons with HIV, including the use of unique identifiers, sentinel studies, and incidence and prevalence studies, some have championed name reporting as a "traditional' response to infectious diseases which should be used with AIDS.
Twenty seven states have already implemented name reporting HIV surveillance. 4 But these states represent only 24 percent of the AIDS cases that have been reported to the CDC. 5 "High incidence" states have thus far refused to adopt name reporting in the face of strong opposition from community groups and public health officials.
Proposals for name reporting take numerous forms. The unifying element is reporting the names of individuals who test positive for HIV to a government agency. Most often proposals for name reporting require individuals being tested for HIV (or an equivalent test, such as viral load or CD4) to provide their name, contact, and demographic information when they seek an HIV test. If the individual tests positive for HIV antibodies, then her/his name is reported to public health officials. Name reporting schemes generally have provisions designed to protect the confidentiality of the individual with HIV.
A. Name Reporting Is Bad Policy If it Discourages People From Being Tested For HIV, And The Available Evidence Shows That it Does
The available evidence strongly suggests that name reporting is a counterproductive public health measure that will cause individuals to avoid HIV testing. Numerous studies indicate that individuals avoid HIV testing that is not anonymous because they do not have faith that test results will remain confidential and because they fear the stigma and discrimination that is often associated with HIV and AIDS. One study found that over 60% of individuals tested anonymously would not have tested if their names were reported to public health officials. 6 By contrast, anonymous testing encourages individuals to seek testing in the belief that they will be able to control the dissemination of information about their HIV status. People are more likely to be voluntarily tested for HIV if the testing is anonymous. 7
Anonymous testing also reduces the period of time that individuals delay testing. Research indicates that the availability of anonymous testing reduces the average delay between deciding to get tested and actually going for the test by more than one half, from a mean of 12 months to a mean of 5 months. 8 Testing associated with name reporting (confidential testing) deters people from discovering their HIV status.
Of course, HIV testing is of little use if the person tested does not return for his or her results. The available data indicates that individuals who test at locations with name reporting are much less likely to return for their results than individuals who are anonymously tested. An analysis of HIV testing in North Carolina found that 30.3% of testees undergoing confidential testing did not return, while only 8.2% of anonymous testers did not retrieve their results. 9 In Colorado, a testing survey showed that 95% of anonymous testers retrieved their results, but only 85% of confidential testees returned. 10
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. Research indicates that gay men are more likely to be aware of name reporting requirements and, as a result, to avoid testing altogether. 11 One study found that half of the men who were tested anonymously would not have been tested at all if only confidential testing were offered. 12 In South Carolina, after anonymous testing was eliminated the number of men who have sex with men who were tested for HIV dropped by 51%. 13 The converse is also true: once anonymous testing is offered, more gay and bisexual men will be tested. Oregon, for example, reported a 125% increase in the demand for HIV testing once the option of anonymous testing was provided. 14 Fear of discrimination and stigmatization is so strong among gay and bisexual men, they will travel to other states if necessary to preserve their anonymity. One South Carolina AIDS service agency reported that 40% of the people it serves were tested out of state. 15 If gay and bisexual men do test confidentially, as opposed to anonymously, they often will wait longer to do so. 16 Given the high seroprevalence rate among gay and bisexual men, delays are counterproductive to the public health goal of HIV prevention. 17
Name reporting is also likely to deter HIV testing by African-Americans and Latinos. 18 The rate of HIV infection is increasing rapidly among people of color. 19 Given this country's history of race discrimination in the guise of public health initiatives, minority communities often distrust coercive public health programs. Mandatory names reporting would only exacerbate this distrust. Researchers from the New York City Department of Health found that 22% of African-American and Hispanic participants would not be tested for HIV if their names were reported to public health officials. 20 One clinician commented that mandatory name reporting "will be the final blow" alienating minority women from clinicians and the health care system, causing them to go "underground fast." 21
Other groups are also deterred from HIV testing by name reporting. Intravenous drug users and sex workers, many of whose primary contact with government has been through the criminal justice system, are more likely to test anonymously. One study found a 56% increase in HIV testing among female sex workers and a 17% increase among intravenous drug users when anonymous testing was an option. 22 Women, in general, are often wary of mandatory names reporting schemes. One study found that mandatory names reporting led to a 31% decline in the number of women agreeing to an HIV test as they sought Ob/Gyn care. 23
Some proponents of HIV surveillance have proposed maintaining anonymous testing, but imposing the mandatory name reporting requirement on medical providers, as a means of avoiding testing deterrence. This is not an acceptable solution, since it simply shifts the deterrence problem away from testing and instead deters people from entering treatment. In a recent survey of individuals testing for HIV in Los Angeles County, 22.6% of survey participants said they would delay treatment until they were actually sick if their doctor were required to report their name to public health authorities. 24
It has been suggested by some that name reporting should be adopted but that anonymous testing should be preserved for those who do not want to be reported. It is far from clear that this type of hybrid reporting would accomplish any of the goals advanced for increased surveillance. Moreover, to make that system work and not deter people from testing, people must understand their options. Individuals would have to be advised that they have the option of anonymous testing, and anonymous testing sites would have to provide the same array of services provided by sites that record the name of the testee for reporting purposes (confidential testing sites). Medical providers could not be required to report the names of patients who are HIV positive against the patients' will, since that would deter treatment as opposed to testing. The history of minority communities and public health suggests that a system like this would not truly reassure those who need to be tested. If proponents of name reporting believe this option, faithfully implemented, would advance the goals of increased surveillance, it ought to be tried on a trial basis and the effect on both reporting and deterrence assessed before it is widely used.
In sum, the available evidence indicates that rather than helping to control the spread of HIV and AIDS and encouraging earlier medical intervention, name reporting is likely to lead to decreased testing by those who most need it. That means that far from advancing the goal proponents offer for increased surveillance -- more accurate information and earlier medical intervention -- name reporting is likely to defeat them.
B. Testee Fear of HIV Name Reporting Cannot Be Dismissed as Irrational
Many individuals apparently fear taking an HIV test that is not anonymous, as the evidence discussed in the last section shows. It is worth stressing that the perception of the testee is what matters most. If that perception is going to prevent an individual from testing, it does not matter whether the perception is based on misinformation, reality, or some combination of the two. The sad truth, however, is that these fears cannot be dismissed as irrational.
At the heart of the fear is concern about discrimination on the basis of HIV status, and this concern is real. Laws cannot prevent family and friends from abandoning a loved one because she has HIV or because he is gay. And recent legal developments indicate that persons with HIV still have reason to worry about even those types of discrimination that the law is designed to address. Although it had once been assumed that the Americans with Disabilities Act (ADA) provided broad legal protections from discrimination against anyone with HIV, according to some federal courts this is not the case. A federal appeals court has ruled that the ADA does not protect people with HIV who have not yet developed serious health problems, even if they have suffered from discrimination. 25 Another federal appeals court has held that the ADA does not protect many people with either HIV or AIDS from discrimination in insurance. 26 Thus, the anti-discrimination protections supposedly provided by the ADA may be becoming illusory for people with HIV.
It is unlikely that the fears of individuals at high risk for HIV can be overcome by promises that name reporting will be accompanied by privacy protections. Minority communities are often distrustful of public health authorities and coercive public health programs. 27 Existing privacy protections have not prevented breaches of confidentiality from occurring. In one example, thieves stole a computer containing the names of 60 persons with AIDS from a public health office in Sacramento, California. 28 As this incident demonstrated, computerization and modern security devices do not provide complete security. Moreover, the complexity of modern computer systems and data banks will inevitably lead to mistakes that are at once common and difficult to correct. 29 These general problems take on special significance in the context of HIV surveillance, given the sensitivity of HIV-related information.
Despite the frequent claim that this has never happened, confidentiality is breached. Agencies cannot control how authorized personnel use the data to which they have access, creating a risk of both inadvertent and intentional confidentiality breaches. 30 Personnel with access to names include federal, state and local public health administra