by Chandler Burr
http://www.chandlerburr.com/articles/

The AIDS Exception: Privacy vs, Public Health

Illustrations by Ivan Chermayeff
The Atlantic Monthly June 1997
pages 57-67

The AIDS Exception: Privacy vs, Public Health
by Chandler Burr

It's time to stop granting "civil rights" to HIV -- and to
confront AIDS with more of the traditional tools of public health

by Chandler Burr
EPIDEMIOLOGY, which encompasses both the systematic study of
infectious disease and the implementation of the means to contain
it, is something of a medical oddity. As dependent on
statisticians and politicians as it is on medical-care providers,
and often used at times of desperation, by practitioners who have
been accorded police and in certain cases military powers,
epidemiology has sometimes had to strike a balance between the
harshness that may be required to control infectious diseases and
the civil liberties of people whose rights may be subject to
abridgment.

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.

"We have convinced ourselves," Ralph Frerichs, a prominent
epidemiologist at the University of California at Los Angeles,
wrote in a recent issue of the journal Epidemiology, "that the
fight for survival can be waged in a way that is socially
acceptable but not always biologically credible." Many
public-health officials, he contended, "have remained steadfast
in their commitment to programs and approaches that have hidden
the identity of HIV carriers but have failed to halt viral
transmission" -- a commitment that is in the end bound to prove
self-defeating, "making winners of the virus but losers of
people."

THE PRICE OF COOPERATION

WHAT is known in the field of public health as AIDS
exceptionalism has been maintained in legally and
programmatically direct ways and also in complex and subtle
ways. Its origins are not difficult to ascertain.

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. "In the first months and years
of the epidemic," the journalist Elinor Burkett, the author of
The Gravest Show on Earth (1995), recalled not long ago, "people
with AIDS died in the hallways of hospitals, where nurses
wouldn't touch them. They were kicked out of their
apartments. Insurance companies canceled their policies. Their
bosses fired them. They had no idea how to get Social Security
disability payments or Medicaid."

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 (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."

A NUMBER of opportunities present themselves for the routine
testing of people for various diseases by public institutions,
routine testing being defined as testing that can be performed
without a person's explicit consent. Pregnant mothers are
routinely tested for tuberculosis, hepatitis B, and syphilis;
testing for chlamydia and group-B streptococcus is also common
under certain circumstances.  Newborn babies are routinely
tested, without the mothers' permission, for phenylketonuria and
hypothyroidism.  Patients admitted to hospitals may undergo a
variety of blood tests, depending on their symptoms, the tests
being performed as a matter of course, without necessarily
informing the patient or asking explicit permission.  Although a
patient can at any time refuse to undergo a routine test, he or
she does not have to be specially notified that the test is being
done or given a specific opportunity to refuse.

HIV testing, in contrast, is almost always voluntary -- which
means it is done either at an anonymous-testing site or with a
person's explicit permission (and which usually means also that
the person being tested must sign a release). At the federal
level HIV testing is required only of immigrants entering the
country, foreign-service and military personnel, and
federal-prison inmates. At the state level routine testing is
prohibited everywhere except under narrowly defined
circumstances.  Marcia Angell, the executive editor of The New
England Journal of Medicine, and a proponent of routine testing
in some form, says, "Having to ask specifically has a huge
effect, and it is a clear difference between AIDS and many other
diseases."

Making even certain subpopulations the target of routine testing
would turn up large numbers of infected people who currently
escape detection. In a 1992 New England Journal of Medicine
article Robert Janssen and his colleagues at the Division of
HIV/AIDS at the National Center for Infectious Diseases
recommended voluntary targeted testing for HIV in certain
hospitals, a policy well short of routine testing and yet one
that has been implemented virtually nowhere. They wrote,

      We estimate that about 225,000 HIV-positive persons were
      hospitalized in 1990, of whom only one third were admitted
      for symptomatic HIV infection or AIDS. Routine, voluntary
      HIV testing of patients 15 to 54 years old in hospitals
      with 1 or more patients with newly diagnosed AIDS per
      1,000 discharges per year could potentially have
      identified as many as 110,000 patients with HIV infection
      that was previously unrecognized.

Testing that is merely voluntary may also miss populations that
disproportionately need to be reached. The people least likely to
have the virus are the most likely to say yes to a test, and the
people most likely to have it are the most likely to say no. In
one study infection rates were 5.3 times as high among people who
refused HIV testing as among people who consented to it.

One might ask, How could a study give the infection rate of
those who refused the HIV test? The answer demonstrates the
methods that researchers -- in this case, at the New Mexico
Health and Environment Department -- must employ in order to
obtain data without violating personal rights as protected by
law.  Voluntary, anonymous HIV tests were offered over a
three-month period to all patients visiting a
sexually-transmitted-disease clinic. Eighty-two percent of the
patients consented to being tested for HIV.  To determine the
rate of HIV infection among those who did not consent to testing,
researchers located serum that had been taken from these patients
for syphilis testing, removed all identifying information, and
then tested the serum for HIV.

Exceptionalists argue that routine testing will "drive AIDS
underground" -- make people avoid the health-care system
altogether. There is no empirical proof that this will or won't
occur to a greater extent than it already does, under a voluntary
regime. Ultimately one must ask whether people who would go
underground because of perceived self-interest should dictate
policy -- and also whether such people would cooperate in
disease-prevention efforts under any circumstances.

WHY does testing matter? The most basic epidemiology holds that
early knowledge of where a virus is moving -- into which
populations -- is essential to slowing its spread. Even if a
disease cannot be cured, knowing who the infected people are may
help prevent the transmission of the disease to other people.
Geneviéve Clavreul, a California-based consultant to the
International Cancer and AIDS Research Foundation, says that
because of testing and reporting restrictions the California
Department of Public Health is in essence "flying blind" in its
epidemiological tracking. By law or regulation, cases of certain
sexually transmitted diseases and of many other infectious
diseases must be reported to state departments of health, and the
names of the infected are in most cases provided and are always
held in confidence. HIV is the exception. Although the disease
called AIDS must be reported by name in all fifty states,
infection with HIV, the virus that causes AIDS, need not be: only
twenty-six states mandate the (confidential) reporting by name of
positive test results for HIV, and these states tend to be ones
with modest caseloads. Twelve states -- including California and
New York, by far the two worst-afflicted states -- have no broad
reporting requirements for HIV.

Requiring the reporting of AIDS but not HIV seems equivalent to
requiring, say, that full-blown cases of hepatitis B be reported
but not any newly detected infections with the hepatitis
virus. Actually, it is worse. The incubation period for hepatitis
B is usually two or three months, whereas the period between
infection with HIV and a diagnosis of AIDS is often longer than
ten years. This means that during all this time HIV-positive
people can be both infectious and outside the public-health
system. The disease is further privatized by the HIV home-testing
kits now on the market, which to yet one more degree put testing
and reporting into the hands of individuals.

As noted, state 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.  A report prepared for the CDC by Georgetown University
and Johns Hopkins University's Program on Law and Public Health
observes of this situation: "Disease-specific legislation may
thwart public health goals by generating separate policies,
programs, and procedures for diseases that may share common
behavioral risk factors and require a unified approach for
treatment and prevention."

BEYOND issues of testing and reporting lies the issue of partner
notification. "Partner notification" is the term used by the CDC
to describe a spectrum of outreach efforts. One such effort is
contact tracing, also called "provider referral," in which
doctors or public-health officials locate partners of infected
people (if the infected people are willing or able to provide
names) and notify them of possible infection; the name of the
known infected person is always kept confidential. At a further
remove on the spectrum is "patient referral," in which infected
people locate and notify partners on their own.  Only
thirty-three states have laws that explicitly allow doctors or
public-health officials to notify the sex or needle-sharing
partners of those with AIDS or infected with HIV. Only four
states (Arkansas, North Carolina, South Carolina, and Oregon)
have statutes requiring notification.

All states technically have something that they can point to as
a "partner-notification program," having such a program being a
prerequisite for obtaining certain federal funds. But the
effectiveness of partner-notification programs varies widely, for
reasons relating as much to how the programs are implemented as
to what specific steps they call for: the real difference is
between states, such as Colorado and North Carolina, that
actively strive to find and notify partners primarily through
provider referral, and states, such as New York and California,
that tend to rely on patient referral, deferring the
responsibility of notification to the infected.

   As one would expect, there seems to be a marked contrast
between the effectiveness of well-established
partner-notification programs in which provider-referral services
are made available, and that of programs in which infected people
themselves do the notifying if they are so inclined. One study
found that active partner-notification programs offering
provider-referral services get 30 to 90 percent (depending on the
city or state) of people who have tested positive to cooperate in
contacting those they may have infected. Ninety percent or more
of those contacted agree to be tested. However, programs in which
notification is left up to the infected achieve a cooperation
rate of less than 10 percent. It should be noted also that by
virtue of the fact that trained public-health personnel in most
instances make the notifications in provider-referral cases,
testing information and counseling are made readily available to
possibly infected contacts. 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.

   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. According to the CDC,
the number of Americans infected with HIV is as high as 900,000;
of these, the CDC estimates, perhaps half are unaware of their
infection. At least a quarter of all people in whom AIDS was
diagnosed from 1990 to 1995 in Los Angeles County first became
aware of their infection when they came to hospitals or clinics
with advanced symptoms, having never previously been tested for
HIV. In all likelihood such peoplehad been HIV-positive for
years. Most cancer, diabetes, or high-blood-pressure patients
have been tested for these medical problems, know their status,
and have begun treatment well before admission to a hospital with
advanced symptoms. The situation with AIDS means, as one Los
Angeles AIDS clinic director observed during a recent interview,
that "something is really wrong." Because the lifetime cost of
treating HIV is so high (estimated in 1993 to be $119,000 per
patient), the CDC has concluded that AIDS and HIV notification
programs pay for themselves if only one in eighty notifications
prevents a new HIV infection by indicating to the notified person
that a change in behavior is warranted.

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 argument that AIDS is a unique marker for homosexuality is
incorrect, and always was so.  Rectal gonorrhea in men has been
almost exclusively a disease of the gay population, and is a more
reliable marker for homosexuality, if anyone were looking for
such a marker, than AIDS ever was. And yet cases of rectal
gonorrhea have appeared for decades, by name and date, in
confidential case reports sent to state public-health
departments.

The argument that confidentiality will inevitably be violated
has met a serious counter-argument in the form of reality: the
experience of Minnesota and Colorado, which have since 1985
mandated the confidential reporting by name of both HIV and AIDS
cases. As of the end of last year, for example, Colorado health
authorities had received the names of 5,723 people with AIDS and
of 5,137 additional people infected with HIV. There have been no
breaches of confidentiality. As noted, twenty-six states now
require confidential reporting of all HIV cases by name. A single
intentional breach of confidentiality in the CDC's AIDS
surveillance system is known to have occurred (in Florida).

As for discrimination, the federal Americans with Disabilities
Act (ADA), passed in 1990, a decade after the beginning of the
AIDS epidemic, prohibits discrimination based on HIV status. In
addition, the federal Vocational Rehabilitation Act of 1973,
state discrimination laws, and state constitutions have all been
interpreted by courts as protecting people from exactly the sort
of discrimination that AIDS exceptionalists claim is
inevitable. And courts have in most cases ruled that being
infected with HIV constitutes a disability according to the legal
definition of the term, even when the infected person is
asymptomatic. "We've done more or less everything that can be
done on the legislative front to protect people from
discrimination on the basis of HIV status," says Chai Feldblum,
an associate professor at Georgetown University Law School and
one of the principal architects of the ADA. "The laws are there."

The argument that contact tracing will prove to be ineffectual
because many of those infected with HIV have had a large number
of sex partners ignores the fact that many of those infected with
syphilis and gonorrhea, other diseases for which gay men are at
increased risk, have also had a large number of sex partners, and
yet contact tracing has been standard procedure for these
diseases for decades.

The argument that name reporting is pointless because there is
no treatment has always been open to question on a number of
grounds. Yes, the statement may have a certain logic from the
perspective of a given infected individual concerned only about
his or her fate. But if infected people can be identified,
education and counseling may at the very least prompt changes in
their behavior which will diminish the risk that they go on to
infect others; contact tracing, in turn, extends the possibility
of risk-diminishing behavioral change even more widely. Knowing
who is infected is essential in helping to prevent new
infections, even if the infected person himself cannot be helped.

Knowing who is infected is essential in helping to prevent new
infections, even if the infected person himself cannot be helped.

In any event, evidence shows that new medical treatments are
making HIV less infectious than ever. The latest treatments are
astonishingly promising for at least some of the infected
population.

Some 15 to 30 percent of HIV-infected pregnant women pass the
virus on to their infants. Early treatment with zidovudine, or
AZT, for the woman during pregnancy and for the infant after
birth, can cut the proportion to eight percent. A new class of
drugs called protease inhibitors is likely to cut the rate even
further, if the drugs are used early. The key word is "early" --
which means testing pregnant mothers, not just newborn
babies. The American Medical Association now recommends that HIV
testing be made mandatory for pregnant women. Gay and AIDS
activists have denounced this recommendation.

Protease inhibitors, which in some cases have reduced the level
of HIV in the bloodstreams of the infected to undetectable
levels, have revolutionized care for many patients. "I think we
already have the capability to make HIV infection a chronic,
manageable disease like diabetes in patients who can afford the
therapy and who can take it with one-hundred-percent compliance,"
says Joel Gallant, the director of the Moore HIV Clinic at the
Johns Hopkins University School of Medicine. Protease inhibitors
have provoked debate as to their long-term effectiveness, their
ability to withstand viral resistance, and their price (the
protease inhibitor Invirase costs approximately $7,000 for a
year's supply), and also, as Gallant has noted, because of the
fastidiousness required for effective administration. But the
fact remains that the exceptionalist argument that no treatment
is possible is losing whatever force it had.

The benefits of knowing who is infected are still more
compelling today than they were in 1992, when the CDC AIDS
laboratory chief Donald Francis, writing in the Journal of the
American Medical Association in favor of more-aggressive testing
and the channeling of the infected into prevention and counseling
programs, brought up "the ability to deliver important new
products produced by scientific research." He wrote,

      Should the day come when a vaccine or therapeutic drug
      becomes available, a system for immediate delivery to
      those in greatest need would be required. There is no
      system by which to do that now.  But if all infected
      persons were being followed up in an early intervention
      program, delivery would be straightforward. In my opinion,
      early intervention should be given the highest national
      priority.

The fact that AIDS is not easily transmissible (it is a hundred
times less infectious than hepatitis B, and incomparably less
contagious than an airborne disease like tuberculosis) provides
further impetus to discover who is and is not HIV-infected. The
knowledge that a given person is infected, if it means that the
person takes any preventive measures at all, is much more
valuable in the case of AIDS than it is for other diseases.

REMEDY-RESISTANT POLITICS?

DESPITE such developments, attempts to alter the public-health
approach to AIDS, though on occasion successful, have met with
fierce opposition. A case in point occurred in the spring of
1995, when Gary Ackerman, a liberal Democratic congressman from
New York, introduced a bill with 220 co-sponsors to "unblind" a
national infant-testing program for HIV run by the CDC as a way
of monitoring HIV-infection rates in women. Since 1988 the CDC
had been "blind-testing" infants for HIV in forty-five states --
using blood samples, collected at birth, from which all
identifying tags had been removed. Testing for HIV in this way
meant that the CDC knew how many infants carried their mother's
HIV antibodies but not who they or their infected mothers
were. Mothers, therefore, were being sent home without being
informed that they and in some cases their children were infected
with a fatal virus. The CDC had no choice in the matter, being
legally prevented from testing without informed consent. Under
the Ackerman bill mechanisms were to be instituted so that if an
infant tested positive, those doing the testing would have a way
of knowing who that infant was, and its mother could be informed.

The response to this proposed legislation was
immediate. Virtually every gay and AIDS group, including Gay
Men's Health Crisis, the AIDS Action Council, and the National
Association of People With AIDS, along with the ACLU and
prominent public-health experts at leading universities, opposed
the bill, largely on the grounds that unblinding the tests would
do nothing to help prevent HIV transmission from mothers to their
infants and would violate the privacy inherent in such an
anonymous surveillance study, potentially scaring pregnant women
away from seeking proper prenatal care. The intensity of feeling
with which such measures have been opposed should not be
underestimated. Ackerman's bill was modeled on a bill introduced
in the New York State Assembly by the Democratic legislator
Nettie Mayersohn to unblind the anonymous infant-testing program
in New York. Mayersohn, a pro-choice, feminist old-line liberal
who in 1989 had been named Legislator of the Year by the New York
State chapter of the National Organization for Women, was labeled
a "fascist" by individuals associated with the AIDS lobby. (Last
June, three years after Mayersohn introduced her original
legislation, the New York legislature passed a bill allowing the
state to institute mandatory HIV testing of newborns and to
notify parents of the test results. Newborn testing began last
February.)

In the matter of the Ackerman legislation, the head of the CDC
informed Ackerman that if the bill were not withdrawn, the CDC
would suspend the infant-testing program altogether. Ackerman
gave no credence to this threat by a public-health agency,
because the infant-testing program was demonstrably useful in
tracking the prevalence and trajectory of heterosexual AIDS. But
the CDC program was indeed suspended.  Public-health authorities
thus lost even this imperfect means of monitoring one aspect of
the epidemic.

In response to the CDC's suspension of testing, Ackerman joined
forces with Tom Coburn, a Republican congressman and a Christian
conservative from Oklahoma, to draft new legislation that has
become known as the "Baby AIDS Compromise." The legislation was
enacted last May as part of a larger bill, the Ryan White CARE
Reauthorization Act. The compromise requires state health-care
workers to offer counseling and voluntary HIV testing to pregnant
women who have not previously been tested for HIV. States that by
March of 2000 do not meet certain goals with respect to the
voluntary HIV testing of pregnant women or to HIV incidence among
newborns will have to implement a mandatory infant-testing
program or lose some federal AIDS funding.

THE ultimate question for AIDS exceptionalism is this:
Do the disease-containment and disease-prevention measures of
traditional public health -- the measures from whose full force
AIDS has been significantly shielded -- work? The answer given to
this question by AIDS exceptionalists as well as traditionalists
seems to be yes. Joel Gallant, for example, opposes routine
involuntary testing for HIV and aggressive partner notification,
but not on medical grounds; rather, he fears the potential for
employment and insurance discrimination, domestic abuse, and
breaches of confidentiality. He maintains that he would otherwise
favor traditional public-health procedures for the fight against
AIDS, particularly routine testing.

Lee Reichman, the executive director of the National
Tuberculosis Center and a physician on the staff of the New
Jersey Medical School who cares for AIDS patients, cautions that
given the course that the evolution and politics of the disease
have taken, traditional public-health measures by themselves may
no longer be feasible, in part because of the possibility that
they will drive the infected underground. As noted, this is an
exceptionalist article of faith. But Reichman goes on:
"Traditional public health is absolutely effective at controlling
infectious disease. It should have been applied to AIDS from the
start, and it wasn't. Long before there was AIDS, there were
other sexually transmitted diseases, and you had partner
notification and testing and reporting. This was routine public
health at its finest, and this is the way STDs were controlled."

In the months ahead a national debate may well be joined over
rescinding the exceptional public-health status of AIDS, owing in
part to a bill introduced by Tom Coburn, the Oklahoma
congressman.  Coburn's bill, the HIV Prevention Act of 1997,
would establish confidential HIV reporting nationwide. It would
require states to inform anyone who has been exposed to HIV. It
would require that all people accused of sexual offenses be
tested for HIV. And it would allow health-care providers to test
a patient for HIV before performing a risky invasive medical
procedure. The Coburn bill contains a number of other provisions
and also two nonbinding "sense of the Congress" resolutions, one
urging states to criminalize the intentional transmission of HIV,
the other affirming the principle that strict confidentiality
must be observed in carrying out the bill's provisions. (A
companion bill has been introduced in the Senate.) "The fact is
that epidemiology works," Coburn says, "and public-health
policies work to control disease, and they work by identifying
vectors of infectious disease, and you notify people at risk. If
you don't do that, you can't control the disease. And that's what
we've not done with HIV."

The AIDS Action Council -- a group "dedicated solely to shaping
fair and effective AIDS policy," in the words of its literature
-- has denounced the Coburn bill as "an attempt to federalize
policies that do nothing but stigmatize and punish people living
with HIV/AIDS." The act, in the view of the council,"replaces
education and personal responsibility with 'Big Brother'
intrusion and control." In previous statements the council has
characterized measures like the ones now proposed as "failed
policies that do nothing to prevent any more Americans from
becoming infected with HIV."

It is hard to see how traditionalist policies can be said to
have "failed" with AIDS, since they have not been systematically
tried. Be that as it may, some skepticism toward legislation like
Coburn's is warranted. Conservatives representing themselves as
public-health advocates are certainly vulnerable to a charge of
hypocrisy. Coburn's bill does not address one of the
exceptionalists' central criticisms: that although traditional
procedures will identify more infected people, conservatives are
not prepared to offer any plan for helping those infected people
(many of whom have no health insurance and little education, and
many of whom are homeless) after they have been identified. The
Coburn bill offers no new funds for the state public-health
departments that would be obliged to carry out its testing and
reporting provisions. A traditionalist approach to AIDS will cost
money, and those who advocate such an approach should be making
the case that more money is needed.

A traditionalist approach to AIDS will cost money, and those who
advocate such an approach should be making the case that more
money is needed.

Exceptionalists also point out, correctly and bitterly, that the
hatred directed against homosexuals, and the discrimination they
experience at the hands of anti-gay conservatives, among others,
are responsible in the first place for the very exceptionalist
policies that conservatives like Coburn now so strongly
oppose. Coburn's own outlook gives one pause. It was Coburn who
elicited condemnation and ridicule when he criticized the airing
on network television last winter of Schindler's List,
complaining about the depiction of violence and frontal nudity.

As noted, epidemiology has sometimes had to weigh the issue of
civil rights against the issue of effective disease control. The
time has come to consider anew how these factors should tip the
scales. We do not, of course, have an absolute guarantee that
traditional epidemiology applied to AIDS and HIV would markedly
bolster the success of public-health efforts. But such a
guarantee is hardly required. Marcia Angell, of The New England
Journal of Medicine, observes, "Nobody can document or prove that
traditional methods of control would work better at containing
AIDS, because nobody has done what would be necessary to get such
proof -- studying two populations, one in which traditional
methods are applied and one in which they aren't. The reason no
one has done this is that it is impossible. It is impossible
because it's unethical and logically unworkable. So, as in many
things in life, the default position is common sense.  And I have
no doubt, given the track record of these methods in controlling
other diseases, that if, for example, we screened all expectant
mothers, we could prevent AIDS in many cases. And if we traced
partners, we would prevent AIDS in many cases. And if we
routinely tested in hospitals, we would prevent AIDS in many
cases."

Ralph Frerichs, of UCLA, framed the matter like this in the
course of an interview: "Historically, public health has always
transcended the legal system, much like the military. When you
have an outside threat, you can suspend the normal rules of
society. Traditionally, we epidemiologists have been granted full
responsibility, but society has eroded that, and we now talk
about respecting the rights of human individuals who have
disease-causing viruses, bacteria, and so on, which makes it
increasingly difficult to stop the spread of these diseases. This
is society's choice. But this is de facto granting rights to the
viruses and to the bacteria. And when epidemics are presented
this way, as a matter of rights, the public has a harder time
distinguishing the infection from the infected. The virus is our
enemy, not the person with the virus, but at the same time that
person harbors the virus, and we need to take a series of steps
to prevent that virus from moving to another person.

"In AIDS, as in all epidemics, there is a tradeoff between
emphasizing detection of the virus and the civil-rights
violations that detection engenders. Given that we have not
pushed for aggressive testing, reporting, and partner
notification, it appears that our society is willing to accept a
higher amount of HIV infection to avoid interfering with the
rights of HIV-infected people."

Earlier this year the Centers for Disease Control and Prevention
reported that largely because of gains in life expectancy among
the infected, annual deaths from AIDS had registered a
significant decline for the first time since the onset of the
epidemic. That they have done so is hardly grounds for
complacency. It is evidence, however, that medical interventions
make a palpable difference -- and is all the more reason to start
subjecting AIDS, from a public-health perspective, to
more-systematic procedures.

In the end AIDS would be unlikely to prove resistant to good
basic public-health policies. It may survive if it can circumvent
good sense.

The AIDS Exception: Privacy vs, Public Health
by Chandler Burr
http://www.chandlerburr.com/articles/