BOOK REVIEW:
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.
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.
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.
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.
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.