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Date:         Mon, 13 Apr 1992 16:00:44 EDT
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Subject:      AIDS politics

  Writing in Time, Charles Krauthammer described the May 1990 protests
by AIDS activists at the National Institutes of Health as a most
misdirected demonstration: "The idea that American government or
American society has been inattentive or unresponsive to AIDS is quite
simply absurd."  On the contrary, "AIDS has become the most privileged
disease in America," this since Congress continues to allocate an
enormous amount of money for research and for the treatment of people
with HIV-related conditions.   Except cancer research, HIV-related
disease now receives more research funding than any other illness in the
United States, a priority Krauthammer maintains is all out of proportion
to its significance since AIDS kills fewer people each year than many
other diseases.  The privilege of AIDS even extends to access to certain
experimental drugs--access others do not share.
  Chicago Tribune columnist Mike Royko has also challenged the view that
there is government indifference regarding AIDS.  "That might have been
true at one time.  But it no longer is.  Vast sums are being spent on
AIDS research.  Far more per victim than on cancer, heart disease and
other diseases that kill far more people."  In his view, some AIDS
education posters have far more to do with the "promotion" of
homosexuality than with the prevention of disease.  Views of this kind
reflect a movement that would assign AIDS a lesser standing in the
social and medical priorities of the nation.
  This view is not new in the epidemic; the sentiment that homosexuals
with AIDS were being treated as a privileged class had surfaced as early
as 1983.  What is new, though, is the increasing prominence of this
view in public discourse and the extent to which the view is defended.
In The Myth of Heterosexual AIDS, Michael Fumento mounts a full-scale
defense of the proposition that the AIDS epidemic has achieved national
and medical priority all out of proportion to its dangers, especially
since the disease will make few inroads against white, middle-class
heterosexuals.   Fumento writes in self-conscious sound-bites: "Other
than fairly spectacular rare occurrences, such as shark attacks and
maulings by wild animals, it is difficult to name any broad category of
death that will take fewer lives than heterosexually transmitted AIDS."
He also says that the mass mailing of the Surgeon General's report on
AIDS to every household "makes every bit as much sense as sending a
booklet warning against the dangers of frostbite to every home in the
nation, from Key West, Florida, to San Diego, California."  Because
there is no looming heterosexual epidemic and because the nation has
neglected other medical priorities by siphoning off talent and money for
AIDS research, Fumento concludes that "the ratio of AIDS research and
development spending to federal patient costs is vastly out of
proportion to other deadly diseases."  Fumento also believes that the
priority assigned to AIDS will endanger the lives of other people: "The
blunt fact is that people will die of these other diseases because of
the overemphasis on AIDS.  We will never know their names, and those
names will never be sewn into a giant quilt.  We will never know their
exact numbers.  But they will die nonetheless."
  Not only the priority of AIDS on the national agenda but also the
tactics used to put it there and keep it there have found their critics.
 Krauthammer concedes that the gains made by AIDS activists are a
tribute to their passion and commitment, but he believes that such gains
have been won by ingenuous strategy.  He charges that the "homosexual
community," to advance its own interests, first claimed that AIDS was
everyone's problem because everyone was at risk and its solution
required universal social urgency.  As it became clear that people would
not fall at random to the disease, he says activists changed their
tactics and began to prey on social guilt: how dare a society let its
gay men, needle-users, their partners and their children get sick and
die?  But this guilt is unwarranted, Krauthammer believes, since for the
most part HIV-related disease is the consequence of individual choices
that ignore clear warnings.
  Also objecting to activist tactics, the New York Times criticized the
ACT-UP disruption that made it impossible or the Secretary for Health
and Human Services to be heard during his remarks at the 1990
international AIDS conference in San Francisco.  "It is hard," that
paper of record wrote, "to think of a surer way for people with AIDS to
alienate their best supporters."  The action was characterized as a
pointless breakdown in sense and civility.  "ACT-UP's members had no
justification for turning a research conference into a political
circus," especially since, in the standard refrain, society has not only
not turned its back but has committed extravagant effort and resources
to the HIV epidemic.  The disruption, moreover, was all out of
proportion to the matters protested: immigration restrictions (since
lifted) for people with HIV infection and President Bush's absence from
the conference by reason of an event important to the reelection of
North Carolina Senator Jesse Helms.
  In a different vein, Bruce Fleming suggests in The Nation that
Americans have come to hype AIDS because of a distorted sense of what it
means to be sick and dying.   Westerners, he says, assume that
absence of disease is the normal state of human being, and that disease
thereby becomes a divergence to be named, isolated, and eliminated.
Thus can there be the fury and anger he found in a presentation at a
Modern Langauge Association convention, an AIDS address full of Susan
Sontag, Harvey Fierstein, and laments about the lost golden age of free
sex.  Accepting sickness and death as an integral part of life, he
thinks, would free us from the frenetic feeling that AIDS and all
disease was unfair treatment amenable to moral and medical
control--control it is in any case impossible to achieve.
  For all the good intentions here, intentions to remember people sick
and dying with other conditions, intentions to keep priorities and
discourse rational, intentions to recall the inevitable mortality of
human beings as an antidote to their hubris, there is little good reason
to shift the priority now devoted to the HIV epidemic, to smear the
tactics that have made that priority possible, or to alter the view that
sickness and dying with HIV-related disease are evils to be resisted.
  Fumento's book makes the most direct claim that people are dying from
neglect because the nation has chosen to worry about people with
HIV-related conditions.  For this reason he thinks AIDS needs to be put
into perspective, but he offers not a word about what priority an
infectious communicable lethal disease should receive as against, for
example, diabetes or certain heart conditions, which are noncommunicable
and can be successfully managed by medicine throughout life.  There is
not a word, indeed, on how priorities ought to be set at all.  Surely an
infectious, communicable, lethal disease ought to receive priority over
diseases that can currently be medically managed in a way that permits
people to live into old age, a prospect not enjoyed by people with
HIV-related disease.  It is not even clear that funding should be
allocated according to the number of persons affected by a particular
disease, since such allocation would effectively orphan certain diseases
altogether.  Moreover, many of the diseases that do now kill people in
numbers greater than AIDS have a long history of funding, and the
expenditures made on behalf of AIDS research and treatment should be
measured against that history, not against current annual budget
allocations.  It may be that AIDS is only now catching up with
comparable past expenditures.
  Perhaps it is the seemingly voluntary nature of infection that invites
the notion that enough has been done for HIV-related conditions.  After
all, if only people refrained from behavior known to be associated with
HIV infection, they wouldn't be at any risk of sickness and death.  But
HIV-related disease is not simply a matter of individual failure to heed
clear warnings.  Many cases of AIDS were contracted before any public
identification of the syndrome.  Even after the identification of the
syndrome, there was no clear identification of its cause or how to avoid
it altogether.  Early on, there were no efforts to protect blood used in
transfusions even when certain screening tests were available.   Even
after the discovery of the presumptive causal virus and development of
blood-screening tests, educational efforts to reach persons most at risk
were inadequate and in any case no one knew what forms of education were
capable of effecting behavioral change.  What educational programs there
were failed, then and now, to reach drug-users, their sexual partners,
and persons in rural areas.  Some persons were infected by means
altogether beyond their control: by rape, by transfusion, by Factor VIII
used in control of hemophilia, through birth to an infected mother, by
accidental needle infection while providing health care or using drugs,
through artificial insemination.  Because of ambiguities and delays
(culpable or not) in biomedicine, education, and public policy, it is
not evident for the majority of people with AIDS that there were "clear
warnings" that went unheeded.
  Even now, when HIV-related disease is well known, it does not follow
automatically that those people who contract an HIV infection do so in
any morally culpable sense.  Over ten years will soon have passed since
the CDC first reported the occurrence of rare diseases in gay men and
drug-using persons.  Since that time, ten years of new gay men and
drug-users have come along, persons who may not have been educated about
the dangers of HIV, young persons who will not yet have maturity of
judgment in sexual and drug matters, persons who may not have access to
clean needles or drug rehabilitation programs, who may not have the
personal and social skills necessary to avoid risk behavior altogether.
In some cases there may be cultural and social barriers to protection
from risk as well such as resistance to condom use.  It is important
to remember, too, that as regards the enticements of sex and drugs,
people are weak and not always capable of protecting themselves even
from those risks they know and fear.  It is not surprising then that a
considerable portion of all human illness is self-incurred, brought
about through one's life choices.  This is to vary the principle of
double effect: what is chosen is not illness but sex, food, alcohol,
drugs, and so on.  Their aftermath, unchosen if inevitable, may be
illness.  But it is telling in this society that those whose heart or
lung disease, for example, is related to their life choices are not
asked to wait for research and treatment while those whose disease is
accidental or genetic are served first.
  It is odd that critics see misplaced privilege in the priority and
attention AIDS has won where they might instead see a paradigm for other
successes.  Should the priority accorded to AIDS research and care be
seen as an indictment of the wiles of AIDS activists or should it be
required study in schools of public health?  AIDS activists are not
trying to bleed the government dry, and neither are they blind to the
nation's other needs.  They are merely trying to insure that government
and medicine work together to achieve important goals.  If other disease
research and care is being neglected, the question is not whether
activists have bullied the Congress or the American Medical Association
into questionable priorities.  The relevant question is why other health
care research services cannot be delivered with the urgency and high
profile that the HIV epidemic has received.  In this sense, the HIV
epidemic is an opportunity for critical thinking about the nature of
health care in the United States: is it the nature of the disease itself
or the design of the health care system that makes the HIV epidemic so
formidable?  Is it the transmissibility of the disease or social
attitudes toward sexuality and drug use that make prevention so
difficult?
  But all this talk of the priority given to the HIV epidemic is likely
to be misleading.  It is important to remember that AIDS is no
privilege.  A diagnosis of AIDS amounts to a virtually unlimited
onslaught against an individual's physical, emotional, familial, and
economic resources.  In addition, there is the burden of stigmatization,
given that the disease has sometimes been seen as a punishment or
deserved consequence of immoral behavior.  For example, a 1988
report showed that, depending on the social category of the respondent,
some 8 to 60 percent of persons surveyed considered AIDS to be God's
punishment for immoral sexual behavior.   A minority of Americans is
prepared to tolerate considerable discrimination against people with
HIV-related conditions.  Varying but significant numbers of persons
surveyed report that they would refuse to work alongside people with
AIDS, would take their children out of school if a child with AIDS were
in attendance, would favor the right of landlords to evict people with
AIDS, and so on.  Perhaps most tellingly, the majority of people in one
survey believed health professionals should be warned if patients have
an HIV infection, and a third would allow physicians to decide whether
to treat such patients.
  This last observation would be benign by itself except that medical
students and faculty express a great deal of apprehension in working
with people with AIDS and there is some evidence that some of them are
choosing specialties and geographies that will keep them at a distance
from such patients.   Some physicians have even taken to the pages
of the New York Times to announce that they will refuse to treat any
patients with an HIV infection.   Nursing recruitment has become
difficult for hospitals that care for large numbers of people with
HIV-related disorders.  There are still places in the United States
where hospital food trays are left at the doors of people with AIDS
because the nutrition staff will not go into the rooms.
  All the money thus far spent in the HIV epidemic has not by itself
insured adequate medical care for all people with HIV-related
conditions.  This is most especially true for the homeless who have
HIV-related illness.   Neither have the dollars spent on HIV
research produced any medical panacea.  Treatment with zidovudine (AZT)
has proved important for some people but not for all, and there are
still many unresolved questions about its long-term ability to extend
the lives of all people with HIV infection or to guarantee the quality
of life.   Zidovudine notwithstanding, as Larry Kramer has pointed
out, there continues to be one HIV-related death every twelve minutes in
the United States.   Is it therefore surprising that ACT-UP now
chants, "One billion dollars...one drug...big deal"?
  As Charles Perrow and Mauro F. Guillen point out in The AIDS Disaster,
it is of course hard to "prove" that funding for AIDS research and care
has been inadequate.  But as they also point out, a broad array of
highly credible reports have each drawn attention to government and
philanthropic failures to respond to the epidemic.  These reports have
come from the Office of Technology Assessment, the Congressional
Research Service, the General Accounting Office, the Institute of
Medicine, and the Presidential Commission on the Human Immunodeficiency
Virus Epidemic.   Whatever funding has occurred, it is hard to see
that one can object to the amounts per se that need yet to be spent.
The money called for by, for example, the Presidential Commission on the
Human Immunodeficiency Virus Epidemic or the Institute of Medicine and
the National Academy of Sciences  is not an invented figure pulled
out of the air as a way of keeping scientists and bureaucrats in fat
salaries.  The figures represent estimates made in good faith about the
extent of funding needed.  It was clear early on that billions would be
required, and that estimation has not changed merely because headlines
have moved on to other subjects.
  Perhaps the public is used to thinking in terms of billions only for
military budgets, but the medical expenditures of the nation are
measured in billions as well.  The research carried out by the National
Institutes of Health has always been enormously expensive, as has been
the provision of medical benefits to veterans, the elderly, and the
poor.  The federal funding of dialysis for end-stage renal disease
alone, for example, provides life-saving therapy for only some seventy
thousand people, yet its costs have been measured in the billions since
Congress decided to pick up the bill for such services.   If this
kind of funding is any precedent, neither high cost nor small number of
affected persons serve as a convincing rationale for limiting the
funding now accorded to AIDS research and treatment.
  Budget requests based on what should be done are one thing, of course,
and budgets actually produced in government legislatures are another.
The question at issue in discussions about the "privilege" of AIDS is
the question of what priority should be assigned to AIDS funding given
all the other funding needs that face the nation.  Richard D. Mohr has
argued that AIDS funding exerts a moral claim insofar as the disease is
associated with gay men; in many of its most significant aspects, the
HIV epidemic is the consequence of prejudicial social choices and
arrangements.   Because its rituals, laws, educational system, and
prevailing opinion fail to offer gay men any clear or supportive pathway
to self-esteem or any incentives to the rewards of durable
relationships, society has effectively forced some gay men into
promiscuous behavior.  Neither does society permit gay men the
opportunity to form families that could shoulder at least part of the
care their sick need.  Patricia Illingworth has fleshed out this
argument and extended it to drug users as well.   These are powerful
arguments; it is hard to think, for example, of a single public ritual
in family life, education, the media, religion, or the law that
dignifies the love of one man for another, that supports any abiding
union there.  It is also hard to see that society has protected its
needle-users where it cannot prevent drug use or offer successful drug
rehabilitation programs.  American society's enthusiasm for wars on
drugs has not, after all, been translated into action capable of helping
any but a fortunate few stop their drug use.  Needle-exchange programs
have been rejected out of fear that such action will appear to "condone"
drug use--a fear that is odd given the de facto acceptance of drug use
at every stratum of American culture from Supreme Court justice nominees
on down.
  It is not surprising then, that left to their own devices, many gay
men, drug users, their sexual partners and children find themselves at
the mercy of an indifferent virus as they try to lead what lives they
can.  Victims of disease rarely "just happen."  More often than not
society's choices permit them to happen, indeed make them inevitable.
Robert M. Veatch has observed that it is fair to permit inequality of
outcome where opportunities have been equal, but such a conclusion as
regards health care would "not apply to persons who are truly not equal
in their opportunity because of their social or psychological
conditions.  It would not apply to those who are forced into their
health-risky behavior because of social oppression or stress in the mode
of production."  Because many of the persons who have contracted
HIV-related conditions have done so under circumstances implicating
prejudicial social arrangements, there is a substantial claim that
priority for HIV research and care is required for reasons of
compensation.
  But it is not compensation alone that frames the moral imperative
about how a society should act here.  Moral philosophy also avails
itself of the supererogatory, those burdens we undertake beyond the call
of formal obligation.  Seen from this perspective, the society worth
praising, the society worth having is the one that will find ways to
care and to research, even though there is no formal obligation to do so
and for no other reason than that its citizens are ill and dying.  The
care of those who contracted HIV infection through blood transfusions
would be relevant in this regard, as would be women whose HIV risk was a
secretly sexually active husband.  The morally admirable society would
do what it could to protect such persons from infection and care for
them when they are sick whether or not society specifically owes them
this concern and care as a form of compensation.
  Cost alone should not be any obstacle for keeping AIDS research and
care a national priority.  The research is as important as any other
research being conducted in the United States today.  Delaying this
research will not only impede therapy and vaccine development, but it
will also subject the eventual costs to inflation; AIDS research will
only get more expensive the longer it is delayed.  Delays in researching
treatments and vaccines will also increase the number of people who may
be potentially at risk of HIV-related disease.  It is worth remembering
that only one disease (smallpox) has ever been entirely eliminated.
 HIV-related disease is a problem for our time, and it will be a problem
for future generations.  It is not something that one can throw a fixed
sum of money at before moving on.  Even when fully effective vaccines
and treatment become available, there will be people who will fail to
benefit from either by reason of social deprivation, geography, choice,
and chance.  HIV-related disease therefore needs to be treated as a
disease that is here to stay and not one that has already had its share
of the limelight and public coffers.
  Objections to ACT-UP disruptions of traffic and speech seem to share
the view that quiet discourse, argued in mannerly fashion by legislators
consulting with medical boards is enough to insure that the nation will
set appropriate medical goals.  But this view of rationally framed
public policy is not entirely true to history.  There are few important
social reforms that did not require the abandonment of polite discourse
and the disruption of business as usual.  It is important to remember
that government and policy in this country are as much a product of
protests, strikes, and civil disobedience as of reasoned debate.  It is
wrong to pretend that civil disobedience and social disruption are not
part and parcel of this nation's political techniques, and it is wrong
to blame AIDS activists for using these techniques as others have used
them.  Perhaps we have forgotten that the United States owes its very
origin to acts of rebellion that the New York Times might have found
easy to condemn as breakdowns in sense and civility.
  Without protests, moreover, it is hard to see how the battle against
AIDS would ever have gotten off the ground.   In the early years of
the epidemic, the sickness and death of small numbers of gay men did not
lend itself to the advocacy of important legislators and medical
commissions.  It was necessary then that impolite discourse be used in
order to be heard.  That need continues to this day.  Most of the many
recommendations of the 1988 Presidential Commission Report on the Human
Immunodeficiency Virus Epidemic, for example, are already collecting
dust.  If an analysis with the stature of a Presidential Commission
report cannot spur action on important goals, what other recourse is
there than the tried and true methods of protest that are as much a part
of American democracy as its parliamentary rules of order?   It is
odd that where people do not see conspiracy behind AIDS activism, they
see irrationality and impropriety when what they might see is a standard
of urgency and passion by which to evaluate and improve the entire
health care system in the United States.
  It is hard to see moreover that an acceptance of disease and dying, in
the way Fleming has urged, is anything but an invitation to quietism.
If disease and dying are inevitable, what incentive is there to resist
their damages?  Granted, some Americans may have lost the sense of their
mortality, but it is hard to see that much is gained by restoring it.
On the contrary, it may be the perception of disease as "excrescence"
that is the very spur to its control and eradication.  There is no point
in glorifying disease and dying; the lessons they teach are easily
learned and do not require advanced instruction.  There is a point at
which sickness and dying cease to offer insights into the human
condition or opportunities for strength and become instead unbearable,
unredeemable absurdity.  This is most often how AIDS appears to those
who know it.  To his credit, Fleming does say that hesitation by the
U.S. government to carry out necessary HIV research would be criminal.
But if this is so, then it's unclear that the change in the perception
of death he counsels would make any practical difference in regard to
the responsibility of government and medicine to resist the epidemic as
much as it can with all the resources it can muster.
  The sentiment nevertheless grows that AIDS is getting more than its
share of media attention, resources, and social indulgence.  But there
really hasn't been any change in the status of the epidemic to warrant a
change in the scope or intensity of research and treatment programs.
HIV remains a highly lethal, communicable virus.  Despite better medical
management, the number of HIV-related deaths continues to increase.
More and more hospital resources have to be directed to the care of
people with HIV-related conditions.  What accounts for the sentiment,
then, that AIDS has gotten more than its share?  From the onset of the
epidemic, there have been many dire prophesies about the toll of the
epidemic, predictions that millions to billions would die.   Is it
possible that critics can say that AIDS has gotten more than its share
because it has not yet killed enough people?  Is the same indifference
that first kept the epidemic at the margins of national attention now
inspiring the claim that enough has been done?  The sentiment that
enough has been done for AIDS has primarily been argued in the press or
journalistic accounts and not in professional journals of medicine,
bioethics, or public policy.  Could it be that this sentiment belongs to
those who do not know the epidemic at first hand?
  If HIV research and therapy are relegated to a lesser rank in the
nation's priorities, it will be gay men, needle users, their sexual
partners and their children who will continue to pay the price of
neglect, and the epidemic will become again the shadow killer that it
was in the beginning.  In view of the people who are still sick, who are
dying, who bear the costs of this epidemic, it is too early and shameful
to say that enough has been done.  In an epidemic not yet ten years old,
it is too early for a backlash.

R. E. Fitzgerald
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