The AIDS Circus
by Lars Eighner
The Gravest Show on Earth:
America in the Age of AIDS
by Elinor Burkett.
Houghton Mifflin, 1995.
399 pgs. $24.95
This is a dangerous review of a dangerous book. The danger is in
writing anything true about AIDS. Whatever you write, someone will
hate you, and if you write enough, everyone will hate you.
Moreover, telling only part of the truth in hopes that only part of
the people will hate you does not work because in the swirling
controversies, the acceptable truth today is tomorrow's genocidal
propaganda.
For example, the evidence was clear early that Dr. Robert Gallo
is a son of a bitch. At first AIDS activists found it perfectly
acceptable to say so: Gallo's vain efforts to show AIDS was caused
by his HTLV or a closely related virus, stymied AIDS research at
critical time, and Gallo's claim to have found the cause of AIDS in
HTLV-3 was at best the result of sloppy lab work and at worst, a
conscious effort to rip off the French. Why shouldn't he be
criticized?
Well, because he still has considerable clout in the federal
health bureaucracy, and he still is the foremost retrovirus and HIV
expert in the country. Not only is he our son of a bitch, he is a
major son of a bitch and one of the best. In an American Congress,
funding to follow up a discovery by an American scientist will
always be easier to find than funding for research in which the
French have precedence. Gallo-bashing was redefined as genocidal
pandering to the likes of Jesse Helms.
Burkett tells the story of AIDS personality by personality,
mostly tragic figures, though seldom the people who are dying of
the disease. Larry Kramer: raising the alarm, frustrated, angry, so
long right when others are wrong that he becomes convinced he must
always be right, lost at last in his anger and hubris, first of
many, many Cassandras. Montagnier: who really made the discovery
Gallo claimed, but doesn't have the good grace ever to shut up
about it or to cater entirely to American AIDS orthodoxy. Salk and
Heimlich: old generals against disease, thrown into a battle they
only dimly understood, certain to end ignobly for trying to fight
old wars over. Doug Nelson: fighting for a little equity in
AIDS-care funding and finding himself opposed by his heros, the
first heros of the crisis who have too quickly turned into
budget-hogging bureaucrats. It is a method of exposition that
flirts with the excesses of tabloid television, but perhaps the
only method our Geraldo-hardened attention spans can accept. The
resulting picture is a double exposure: one of a complacent America
laying in the sun, one of a spotlighted deer transfixed by
conflicting impulses as it stares at its doom. It isn't just the
lack of progress, but the lack of movement of any kind that is so
maddening.
(pullquote)
For the most part, AIDS rhetoric begins with
charges of genocide and gets nastier after that.
Much in this book is likely to comfort the likes of Jesse Helms.
It is unavoidable; all the controversy is on the side that regards
AIDS as a serious problem and that wants to do something about it.
On the other side, the side of Jesse Helms and Fred Phelps, who
shows up at the funerals of people who have died of AIDS with
demonstrators bearing "Fags must die" placards, there is no
controversy, and there is little to write about. There are, of
course, contradictions on the right, some may be found in any
speech. But bigotry is a wide umbrella and hardly anyone is
bothered if the reasons for hate differ—if only the correct
people are hated.
Not only is all the controversy on the fight-AIDS side, but also
it could hardly be more acrimonious. For the most part, AIDS
rhetoric begins with charges of genocide and gets nastier after
that. AIDS is the eighth leading cause of death in American. No
doubt everyone knows AIDS is the leading cause of death among young
gay men. Not everyone knows that in New York and New Jersey it is
the leading cause of death among young black women and is second
only to homicide as the cause of death of young black men. The rate
of AIDS deaths among black men is five times higher than among
white men, and among black women, fifteen (yes, fifteen) times
higher than among white women. Racial minorities account for more
than half of AIDS cases. Little wonder, then, that words like
"genocide" come easily to the lips. And by the way, Africa is
dying.
The scientific controversies are sharp enough. There is the
orthodox view of AIDS: HIV alone causes AIDS, anyone into whose
blood a sufficient amount of HIV is introduced will become infected
with HIV, and everyone infected with HIV, who doesn't die of
something else first, will develop AIDS and die. All the heretics
are grouped together under the name "rethinkers" (so named from the
title of a book Rethinking AIDS by Robert
Root-Bernstein). The rethinkers run the gamut from the purely crazy
(AIDS is caused by the orthodox anti-AIDS drug AZT, which fails to
explain why there were AIDS cases before people were treated with
AZT) to the far-fetched (AIDS is caused by accumulated toxins in
the environment) to the really quite sensible (HIV is a necessary
condition of AIDS but not sufficient without some yet undiscovered
cofactor—certain difficult to isolate mycoplasmas are
suspected).
There are several problems with the orthodox view. One is that
some people (perhaps ten percent) with HIV have failed to develop
AIDS. At first this was easily dismissed because HIV has such a
long incubation time and very few people in America were infected
before 1980. But with each passing year, the orthodox view that
everyone infected with HIV will develop AIDS is harder to sustain.
Another problem is that the orthodox view has thus far failed to
explain exactly how HIV kills immune system cells. HIV uses immune
system cells to reproduce itself and then infects other immune
system cells. But why and how, after years of this process, HIV
suddenly kills almost all of its hosts at once is not
understood.
(pullquote)
The scientific evidence linking HIV and AIDS is so
immense that no sane person can doubt the association
As the orthodox view commands nearly all of the funding and
facilities available for research, all is well if the orthodox view
is correct, and of course it would be a waste to spend anything
looking for wills-o'-the-wisp like cofactors. The scientific
evidence linking HIV and AIDS is so immense that no sane person can
doubt the association, but what if—what if the "sole cause"
assumption of the orthodox view is not entirely correct? The
political reality is that funding for AIDS research is going to be
slashed and slashed again. There is a perfectly reasonable fear
that any admission of error at this point would be the end of any
significant funding. It would be the Challenger disaster
of AIDS research, and there is not sufficient pork in AIDS research
to allow a recovery such as NASA has made.
In the orthodox view, there are essentially five ways of
attacking AIDS: eliminate transmission, find a vaccine of the
smallpox type that prevents healthy people from getting the
disease, find a vaccine of the rabies type that helps people who
are already infected defeat the disease, attack HIV in the body
directly, and find better treatments for the opportunistic
infections which are what really kill people with AIDS. If the
cofactor heresy is correct, there is one additional approach which
is to attack the cofactor, whatever it is.
The best solution in the long run, if it is possible, is to find
a vaccine of the smallpox type. HIV, like smallpox, is specific to
human beings and if the reservoir of HIV in human populations could
be eliminated, the disease would be eliminated. The technical
problem in this solution is the rapidity with which HIV mutates.
Flu vaccines, for example, have to be adjusted season-to-season.
They will never eliminate flu although they save many lives in
populations that are most likely to succumb to the flu. If an HIV
vaccine had to be like a flu vaccine that it would be worth
anything is debatable; a constantly adjusted vaccine might catch up
with HIV, which does not spread so fast as flu, or it might
not.
The political problem is that a smallpox-like vaccine cannot
possibly benefit people who are already infected with HIV. As
HIV-positive people, including those with AIDS, and their friends
and relatives are the squeaky wheels in AIDS funding, it is to be
expected that developing a smallpox-like vaccine, which might or
might not work, will have a low priority. A change in this
situation might occur if uninfected white-bread American began to
perceive AIDS as a serious threat—a change we have no sign
of.
(pullquote)
There is now virtually no way to distinguish drugs
that do have some modest positive effects from those that are pure
snake oil
The prevention of transmission is the only serious effort that
is being made to prevent infection. The right wing answer, and
still the answer of the leadership of the African-American
community, is "Just say 'no.'" Needless to say, it does not
work.
On the other hand, safe sex and safer sex programs seem to lose
effectiveness eventually. Burkett is at pains to show that
oral-genital transmission does occur, an argument that does have
another side. The statistics gay AIDS-education projects face make
it clear that unprotected anal sex is still the main mode of
transmission in the gay male community while cases ascribed to
oral-genital contact are very few. Many programs are revamping
their messages. The little cards listing relative risks of a menu
of possible sexual activities are being dropped in favor of the
single, clear-cut message: Use condoms for anal sex every time.
Burkett's subtitle "America in the Age of AIDS" seemed to me a
bit ambitious until I read the book. It is about
America—America in the '90s, as reflected in the problem of
AIDS. In particularly sharp relief are the clear racial divisions
that have become especially apparent in so many other areas over
the last few months. White liberals are puzzled that clean-needle
programs are rejected by the African American community as attempts
at genocide. Clean needles would encourage drug use—but is
that not the position of Jesse Helms and plenty of other white men
who are not noted for having the best interests of
African-Americans at heart? Puzzling. And of course there is the
deep suspicion, at least on the part of males, that the purpose of
condoms is not to interfere with HIV but to stop African-American
sperm. Burkett doesn't get close to that or to the unpleasant truth
that insisting on a condom is not a practical option for the black
women who are most at risk. Instead Burkett concentrates her fire
on the snake oil cures peddled by the Nation of
Islam—although these are not especially different from the
organic-mega-vitamin snake oil cures favored by some gay men.
Most of the precious little progress made against AIDS has been
in drugs designed to interfere with the virus or to treat
opportunistic infections. The problem here is that it is
politically impossible in America to study AIDS drugs under proper
scientific controls. People with AIDS will not enter studies in
which they might receive placebos. If a study with a control is
organized, the protocol is likely to be cut short at the first sign
that the group receiving the drug under test is doing better than
the placebo group: it is considered unethical to withhold the drug
that seems to be doing well from the placebo group. Naturally this
favors drugs that may produce immediate improvement even if in
realty no effect or even a detrimental effect occurs in the long
run. No protocols are based on outcomes because the outcome for the
control group is certain death.
AIDS activists demanded and got fast tracking for AIDS drugs,
demanded and got approval for the terminally ill to receive
untested or undertested drugs, and demanded and got tolerance for
the importation of drugs outside of the normal channels. It is very
easy to understand that dying people will accept even the longest
odds over no chance at all. But the result is that there is now
virtually no way to distinguish drugs that do have some modest
positive effects from those that are pure snake oil.
(pullquote)
it is politically impossible in America to study
AIDS drugs under proper scientific controls
It is insane. Home HIV-test kits could be produced
now—ones that could be read at home, not merely the kind that
involve sending samples off. The AIDS-activist position is that
this must not be allowed to happen because people cannot be trusted
to interpret the results properly or to react to the results
appropriately. On the other hand, a person who is HIV positive
should be allowed to have whatever drug in his or her judgment
might be helpful; the idiot who could not handle a test kit, now
knows best what drugs to take.
Thalidomide was the one pelt on the FDA's wall. Through funding
cycle after funding cycle avoidance of massive numbers of birth
defects by withholding approval of thalidomide was the symbol of
the FDA's worth and a bulwark against deregulation. Thalidomide is
now available to people with AIDS. The days of the FDA are
numbered. AIDS activists and Newt Gingrich will dismantle it
together. This strange juxtaposition is common in the problem of
AIDS: AIDS activists oppose mandatory prenatal testing for HIV
because they oppose all mandatory testing; anti-abortionists oppose
it for fear that HIV-positive fetuses would be aborted.
Burkett turns from one segment of society to another and where
she doesn't find folly she finds avarice—indeed there is a
great deal of money at stake in AIDS. There is an abundance of raw
material here for a cynic. She dispatches some complex subjects
with a single phrase. For example she mentions the high rate of
false positives in AIDS screening tests, as if this were a flaw,
and moves on too quickly. In fact, apparently high rates of false
positives can be explained. (Where the incidence of HIV is low, say
two per thousand, and the false positives are, say, two per
thousand, of four positive tests per thousand, two will be false.
Citing this as a fifty-percent rate of false positives is alarmism.
HIV tests could be adjusted to eliminate false positives, sparing a
few people the trauma of a positive result when they are not
infected—but only at the cost of more false negatives, which
would admit more infected units to the nation's blood supply.) But
either Burkett does not know the explanation or she cannot pass up
a cheap shot. Burkett is sensational, and I do not mean that as a
compliment. Somewhere there must be someone who is sincere and
intelligent and trying to combat AIDS without an axe to grind.
Burkett has not found that person for she does not believe in
motivation without an ulterior motive.
That being said, perhaps no book so valuable as this one could
be written by someone less cynical, less sensational, less thick
skinned. Being attacked by all sides is highly overrated as an
index of journalistic objectivity, but Burkett seems to revel in
baiting as many people as possible. Whether it is bravery or
foolhardiness I cannot say, but only that no one else is likely to
come so near some of these truths again for a very long time. This
is an essential book. Buy it. Read it.