Naming the Patient at the Center of Porn’s Production Moratorium: Ethical Dilemmas and the Policy of AIDS Exceptionalism

Let me begin by saying that I’m not a public health scholar, and let me add that I am also deeply suspicious and even skeptical of public health as a discipline. As another writer noted here, the immortal H.L. Mencken once wrote that public health (back then called “hygiene”) represented the corruption of medicine by morality.

Every time a production hold or moratorium in the adult business is called, a chorus arises demanding to know the identity of the performer patient or patients at the center of it all. Rarely bloodthirsty, the chorus is nonetheless quite vocal.

For most, the interest is based on a natural — a very human — curiosity. For many the interest is voyeuristic, but for performers as a group it is perhaps understood as rooted in a sense of betrayal or to satisfy a drive to know just how “close” they came to tragedy and loss.

For only a few is it based in an ‘in-the-moment’ health concern — and a grave concern to be sure.

But wait — people are put out of work as alleged HIV cases are investigated. Don’t people in the adult industry who are suffering financially have a right to know based on economic hardship?

That one is easy to answer. No.

Industry members certainly have a right to expect a thorough investigation, and to be informed when it is and is not safe to return to work. But financial concerns alone cannot, and should not, trump medical privacy rights or protecting the health of adult performers.

Some reading

For years, whenever production holds or moratoria are placed into effect, I have referred to several source materials, excerpts of which I will share here in hopes of furthering the discussion. They deal with the philosophical spectrum of issues relating to testing and disclosure. Although many of the specific examples are not represented in adult industry testing and generational investigation, the philosophical underpinnings are uniform, and thus the discussion makes for a relevant guide.

The first excerpt comes from an article in the AMA Journal of Ethics from October 2005 entitled, “HIV and Health Law: Striking the Balance between Legal Mandates and Medical Ethics”.

Legal protection of patient privacy and confidentiality depends on whether or not public health concerns outweigh the interest in preserving the doctor-patient privilege. The balancing of these interests is a particular challenge when it comes to privacy concerns associated with HIV status.

A core legal dilemma in the case of HIV/AIDS is determining when the need to protect others, such as sex partners to whom the patient is likely to transmit HIV, supersedes the patient’s right to confidentiality. Public policy encourages high-risk groups to submit to HIV testing because those individuals who know they are HIV-positive are more likely to seek treatment and take precautions that may prevent transmission of the virus. However, if HIV-related information is readily disclosed by health care providers, individuals may become more reluctant to seek testing. When does the protection of others through a breach of patient confidentiality, ie, reporting cases to the authorities, become worth the risk to that individual who may be HIV-positive will avoid testing in order to avoid being reported?

Reporting Risk to Known Contacts

Partner notification is critical so that individuals know they are at risk, receive HIV counseling and testing, and get appropriate medical care. One of the most controversial issues is whether physicians may disclose the HIV status of their patients to known contacts and, further, whether failure to do so may give rise to liability if the known contact becomes HIV-positive. Though the threat of the contact is clear and immediate, individuals may be discouraged from undergoing testing if they know someone will notify contacts.

In other contexts, physicians have faced liability for not warning third parties of foreseeable harm. For example, a California court held that a psychotherapist had a legal duty to warn a third party of foreseeable harm, despite the presence of the client-therapist privilege.

Here we arrive at the nuts and bolts of the matter: the fons et origo of the dilemma faced by those in charge of investigating alleged HIV cases in the pool of adult performers.

Perhaps, then, the problem lies in the way we perceive HIV, and the way it is treated both in law and public health?

AIDS Exceptionalism

Which brings me to the second writing I have excerpted to submit for your consideration, on the subject of ‘AIDS exceptionalism’. It appeared in The Atlantic back in 1997, and it is entitled, ‘The AIDS Exception: Privacy vs. Public Health”.

Since the turn of the century, with the introduction in this country of bacteriological testing and the establishment of boards of health, standard public-health measures have been deployed against infectious diseases. These measures, leaving aside the extreme step of holding people in quarantine, have typically included at least some of the following: routine testing for infection, often undertaken without explicit patient consent; reporting to local health authorities of the names of those who test positive for infection; contact tracing, or the identification of any people who may have been exposed to infection; and notification of these possibly infected people that they may have been exposed. Some combination of these four practices has been commonly applied against outbreaks of infectious diseases, including typhoid, diphtheria, and tuberculosis, and against upsurges in sexually transmitted diseases. It would be surprising if, out of all the viruses and bacteria that can do us significant harm, one was exempted from the scope of these measures. It would be even more surprising if the one chosen pathogen was responsible for an epidemic that today constitutes the leading cause of death among all Americans aged twenty-five to forty-four.

This very thing has, of course, happened, largely in order to accommodate civil-rights concerns. The practice of traditional public health has been to a great degree suspended for acquired immune deficiency syndrome and for human immunodeficiency virus, the virus that causes it. Although various traditional public-health steps are being taken against AIDS and HIV, in differing combinations from state to state, the result is a chaotic patchwork—one that is inadequate, a growing number of critics say, to the task of containing and eradicating AIDS.

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When AIDS first surfaced, in the early 1980s, it was indisputably a disease of urban male homosexuals (and, to a far lesser extent, of intravenous-drug users). Public-health authorities, faced with a fatal, communicable disease whose method of transmission they did not understand, desperately needed the cooperation of the infected—as they would in any epidemic. In the case of AIDS, however, the infected eventually became disinclined to cooperate. . . .

The discovery of HIV, and the development of a test that could detect it, brought matters to a head. In the aftermath of anti-gay persecution and even violence, the price exacted by a terrified gay community for cooperation in even a rudimentary public-health effort was ironclad anonymity. In 1985, shortly before the federal government was to announce the licensing of the first test for detecting HIV, the National Gay Task Force and the gay civil-rights group Lambda Legal Defense and Education Fund filed a petition in federal court to delay this action, pending a legal guarantee that the test would not lead to widespread screening aimed at gay men. They then put pressure on the Food and Drug Administration, which along with the federal Centers for Disease Control <http://www.cdc.gov/>  (now the Centers for Disease Control and Prevention, and henceforward referred to as the CDC) had been made aware of eager queries from school districts hoping to use the HIV test to identify and fire gay teachers. The FDA quickly acceded to the demand that the HIV test be used not to screen and identify people for HIV infection in systematic campaigns but only to screen the blood in blood banks.

Out of the threat that the HIV test posed to privacy grew a rigid resistance to almost all HIV testing without consent—and a public-health approach to combating AIDS characterized by considerable delicacy. The FDA’s agreement to restrict how the HIV test could be used resolved, temporarily, a political problem. Left unanswered, as Randy Shilts, in his book And the Band Played On (1987), observed, was “the broader public health question of how you can control a disease if you decline to find out who is infected.” Shilts went on, “In this poisoned atmosphere, the nuances of long-term consequences for control of the infection fell low on the list of gay concerns.”

The result, ultimately, was the effective suspension of traditional public-health procedures for AIDS, which is to say, there would be no routine testing for HIV; the reporting of the names of the HIV-infected would be required only in some places, and would miss the epidemic’s hotspots; and contact tracing and notification would as a result be greatly handicapped, and in many places pursued in desultory fashion if at all, often in the face of opposition. All efforts were to be voluntary—dependent on educational outreach and persuasion rather than on systematic procedures. “U.S. officials had no alternative but to negotiate the course of AIDS policy with representatives of a well-organized gay community and their allies in the medical and political establishments,” Ronald Bayer, a professor at the Columbia University School of Public Health, wrote in a critical retrospective some years ago. “In this process, many of the traditional practices of public health that might have been brought to bear were dismissed as inappropriate.”

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[S]tate public-health practices mandate that certain sexually transmitted diseases be reported; in part to avoid reporting HIV some states have decided not to classify HIV as a sexually transmitted disease—even though the primary mode of HIV infection is, of course, sexual. As of 1995 only twelve states had classified AIDS and HIV infection as sexually transmitted diseases. Only sixteen states had even classified them as communicable diseases. Treating AIDS and HIV infection as exceptions, twenty-three states, including New York and California, had classified them as a separate category of disease.

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Programs that notify primarily through provider referral find a larger proportion of other infected people, and find them earlier. The sooner a person knows of his or her infection and begins treatment, and the higher that person’s T-cell count when treatment begins, the better the prognosis. In a recent study conducted at a Los Angeles AIDS clinic the average T-cell count in HIV-positive women who entered the clinic through active provider-referral partner notification was found to be 411; the average for all other women entering the clinic was 157. (“T-cell count” refers to the number of T-helper cells, a kind of white-blood cell that is essential to the proper functioning of the cellular immune system; HIV attacks and kills these cells. The T-cell count is closer to 1,000 in a healthy person, though the healthy range is subject to considerable variability. A T-cell count under 200 is one of the criteria for a diagnosis of AIDS.)

Does an absence of routine testing, reporting, and notification mean that a lot of undiscovered AIDS and HIV cases are festering in the larger society? Yes.

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AIDS has been so thoroughly exempted from traditional public-health approaches that civil libertarians have defeated in court attempts by health authorities to notify the spouses of people who have died of AIDS that their husbands or wives were HIV-infected. During the first years of the disease, legislation urged by civil libertarians prohibited physicians and public-health officials from notifying even the spouses of living people who had tested positive for HIV, some of whom continued to have unprotected sex with their partners. In some states laws have been enacted making partner notification by a physician at best discretionary under tightly defined circumstances.

National legislation on spousal notification, passed last year, mandates that states make a “good-faith effort” to notify at-risk spouses. However, in effect the law applies only to states that already require the names of infected people to be reported. And in any event, the matter of partner notification when the partners are (or were) married addresses, of course, only a small part of the AIDS problem.

WRONGHEADED RATIONALES

HOW has AIDS exceptionalism been justified? In the mid-1980s four arguments were regularly heard for exempting AIDS from standard public-health practices. 1) There had never before been a disease that seemed to constitute a de facto marker for homosexuality, with all the social stigma that this label carries. 2) The confidentiality of testing would inevitably be violated, precisely because AIDS is more stigmatized than any other disease. 3) Given the large number of sex partners of many of those who have become HIV-infected, contact tracing would be ineffectual. 4) Because there is no cure for AIDS, and no treatment to render the infected uninfectious, it was pointless to report HIV infection as is done for other infections.

However legitimate the civil-liberties issues it sought to address may have been more than a decade ago, the exceptionalist orthodoxy is now fundamentally wrongheaded as a matter of good public health and medicine.

The frustration over the secrecy surrounding HIV cases affecting the pool of adult performers is completely understandable. While the testing and moratorium system administered by FSC’s PASS functions well medically, the entire process is, I tend to believe weighed down by inherited philosophical frameworks and ‘public health’ attitudes that originated decades ago.

Perhaps its time to revisit the philosophical underpinnings of our approach to HIV/AIDS before we endeavor to plan the best policy for the future.